I agree with Philippa that a meeting with your medical team would be both helpful and wise…. And if your parents don’t want to do this you might want to consider asking for- or making one yourself- a Safeguarding Adults referral to your local social services department if you or your medical team think they are putting you at risk.. ( I’m a retired social worker and ex safeguarding adults board chair… and safeguarding adults is about both protecting people with care and support needs from the risk of, or actual, harm and abuse AND finding the outcomes they want). There is something complicated going on I would think, and it might need a multi disciplinary approach to sort it out and give you the help you need
I am a subscriber who shared this with my best friend who has MCAS. I’m posting this comment on her behalf:
Another MCAS person here (with the added joy of having a medical research background). I'm really sorry for what you're experiencing. To explain to others who find themselves here - the comment about her parents trying to kill her seems unreasonable. But what you have to remember is that inflammation is linked to psychiatry, and that being in a constant state of inflammation and in fight or flight, where you can never let your guard down, is going to have an impact on your interpretation of the world around you. If your parents are constantly putting you at risk, the inflamed brain thinks "what is the motive behind this?" And leaps to an extreme. One of the clues my husband has that I'm reacting to something is I experience psychosis and start thinking everything is against me. It resolves when I'm out of the environment where the allergen is. So if you have someone in an environment with 2 people who are being quite blazee about allergy triggers, there's probably low level allergy triggers everywhere, increased immune response, and increased psychiatric response. But LW has my utmost sympathy as it took a while for my immediate circle to accept my health had changed (I developed MCAS after an anaphylactic reaction to a known allergen) and that what I was experiencing was real. Thankfully 8 years in, they're supportive, and will take some steps to make their houses safer when I visit. I'd say - where possible, take control instead of expecting others to change. Buy a universal remote for the Tele and a differently coloured set of crockery and cutlery that only you use. Keep them in your room when not in use. This will hopefully minimize some of the contact allergies. MCAS is a rubbish and frustrating condition. Cos your body is in meltdown, and if it's not classical allergy (IgE mediated) then the NHS can't help. So you're left with mad amounts of histamine affecting your breathing, gut and skin, and not much support. If you drop the charity Mast Cell Action UK an email, they'll send out info and credible support groups that you can join to seek advice. Best of luck!
I know what you have it’s MCAS. I’m sorry Philippa has questioned your very real concerns by implying you’re over reacting. You’re not over reacting it’s very real and scary. I never had it to that severity but I did have it and now I don’t. I also have family members who think I’m barking mad and are dismissive. Also friends who think the same or say things like ‘don’t you think you’re over thinking it?’. It’s a very lonely place to be. I’m afraid there isn’t much you can do to convince anyone. You could try meeting your medical team with your parents but they still may find it an onerous task to do what is necessary. One thing I would suggest is looking seriously at any nutritional deficiencies because poor methylation does cause MCAS. And mine has resolved by fixing multiple deficiencies namely B vitamins especially B2 (which I need a lot of) and B12. I was on mast cell stabilisers for years before, now I’m not. Also there is a genuine problem with living in fear of one’s own body even if that fear is warranted. Because our nervous system is listening and interpreting everything. For example pain is created in the brain and the brain will increase pain based on the information it receives. If someone overly focuses on pain and worries the brain might think oh you need more pain. It’s the same with any anxiety and worry it can make symptoms worse, it can make the nervous system feel unsafe. I am in no way suggesting you made this up, there is science to support it. John Sarno wrote a great book on pain and how he helped his patients recover from long term pain conditions without drugs. There is a brilliant group called Rest, Repair, Recover by Suzy Bolt. Suzy recovered from long covid. I’ve attended workshops myself and they help you distinguish what might be a medical symptom that requires medical help and one that is a reaction by the nervous system that can be calmed. They do daily classes to help the nervous system. There are lots of people in these groups with MCAS too. It’s a community that will understand you. The work will help with the stresses you described which are very real. It doesn’t replace medical support it’s something to do alongside. I’m sorry I don’t have more advice on your parents but I came to the conclusion that I couldn’t force anyone to see my health issues if they weren’t open to it. I stopped trying to explain. Maybe your best bet is to move out so the tension isn’t there.
I don't think it's fair to present Philippa's framing that way. She presented two equally possible (based on the very little she knows) scenarios and is holding them gently and simultaneously until further information is forthcoming. Being able to hold different possibilities lightly is one of the key skills of a therapist
I also didn't particularly think any of what LW is asking for were that terrible or onerous, which is why I also felt it was a jump to question whether the suffering was ‘real’. Clean food up straight away and wipe something after you've used it? Ok maybe it's slightly more than most people do, but much less than (for example) healthcare workers did to protect their families during lockdown, or is routinely advised for people going through chemo. It felt like “I have a serious condition that required adjustments my parents are unwilling to make, how do I negotiate this” and didn't particularly seem to ring any alarm bells for panic. But also, panic would seem to be a reasonable response if you know things routinely found in your environment could kill you…
I think it's very interesting how people seem to think holding multiple possibilities concurrently and saying a conclusion can't be drawn without further evidence is in some way to degrade any one of those possibilities. It might be that multiple things are true - that precautions are needed, that the parents aren't taking the recommended precautions AND that the LW has an internal framing which is out of sync with objective reality (in as much as there is such a thing), AND it is possible that the two things could even be connected. Eg years of worrying about your existing health condition might cause anxiety out of proportion to the facts. The point is to be able to hold all possibilities with equal love and care until further medical evidence is discussed
I think if someone comes to you with 'I've got an illness which causes...' and has had 18 episodes of anaphylaxis then that's your starting point. As you say, Philippa isn't a doctor - so it's unclear to me why she's questioning a medical condition. We can make an educated assumption of what it's likely to be in answering the LW. What the underlying causes of that are and how much her mental health is affecting her view of it are different issues. I happen to think that questioning the LW's basic reality of what's going on isn't helpful in that cause.
It felt like there were 3 possibilities- the writer overreacting/parents underreacting/something more sinister. I thought it was interesting she veered more strongly to the first 2 despite the 18 episodes this year suggesting some tangible evidence against the first one
I didn't see the third possibility she raised - what are you referring to? I think the question this answer raises, quite deliberately given the title, is about how much of this is objectively true and how much may be an inner script that is divorced from reality. The clue to this being that there is a potential persecution phantasy about the LW's parents wanting them dead. And it really is a question, as in, something that needs to be answered. If the LW has indeed had 18 episodes this year, then their doctor can reiterate that to their parents and ensure that the severity is laid before them in a way the LW feels they don't appreciate currently. Etc.
I guess I saw the 3 options as: writer overreacting/parents being well intentioned but not always managing to keep on top of restrictions/parents deliberately not doing so, either to knowingly harm the writer (hopefully not) or because they don’t believe her. Mad as it sounds to me, I think you do get some people who don’t believe in things like food allergies and will deliberately ignore restrictions.
If the writer has the condition I think they have (MCAS) their caution about cross contamination is not unfounded.
The assumption that the writer is exaggerating their condition just feels a bit uncomfortably like women being ‘diagnosed’ with hysteria…
I don't think there were assumptions though that's my point. Two possibilities are raised and each held equally until further evidence is found. That's the opposite of assumption.
I can endorse Suzy Bolt’s work, my son has a chronic condition first misdiagnosed as Long Covid, is in reality a chronic form of Lyme’s disease with similar symptoms, and has found Suzy’s approach invaluable. It was suggested by a senior consultant at University College Hospital who refers his patients to her courses.
Indeed. I caught a virus that didn’t immediately produce symptoms but attacked my central nervous system. The physical impacts and mental health repercussions were daunting. My body overreacted to all sorts of things. A specialist neurologist in that particular field will/would write a report as to your needs, or one who specifically deals with your diagnosis. Your parents could attend a meeting with you if you so wish. I wish you some form of support external to your home situation and a greater understanding. I was blanked by many people as it was before Covid. People come up to me post Covid and apologise on occasion. It’s hard to understand for them
I cannot help but feel there is some allergy misinformation here. I wonder what her response would have been had LW articulated an immunosuppressed condition that is much better understood (like leukemia/type 1 diabetes/chemotherapy). Would such conditions have produced a title of “Whose Reality Is It Anyway?” - I suspect not, despite anaphylaxis being no less life threatening.
Assuming 18 anaphylactic reactions is true, and there is no reason to think it is not, then that is clear evidence of both a medical condition and experiences that would be traumatic and make someone terrified of recurrence. One would assume loving parents would take that very seriously and meaningfully want to prevent any triggers. I agree that the parents need to be engaged with her medical team and all be aware of a feasible and considered care plan. Many families do undermine and invalidate one family members real medical condition, especially if it is rare or misunderstood. I experienced it when I had hyperemesis (severe pregnancy sickness), there was an undercurrent that I was overreacting. In this respect, I think it is vitally important to validate the letter writer’s experience.
I think I might come at this from a slightly different angle (without much difference in what actions might be the way forward)
Unlike others, I can't assume I know what this illness is, precisely, because the immune system can go wrong in so many individual ways and I'd be interested in how professionals have responded to these 18 episodes of anaphylaxis and indeed how have your parents reacted at the time - are you eg getting the signs of a reaction, taking medication and that's it, crisis avoided (would your doctors say you've had 18 episodes of anaphylaxis?) or is this involving trips to hospital in which they are involved?
Your parents are clearly unwilling to change their own lives - and I think we need to be upfront that the changes *are* onerous, it's a massive cognitive load, even if they were totally on board ....and I am very confident this can be a factor in denial - we don't *want* it to be true you need this and people get funny about precautions that don't even affect them (eg mask wearing). It's also turned the dynamic around - this is their home and typically even though the child might have become an adult, the parents tend to be 'in charge' to some degree, and you are now dictating how they live in their own home. It might be worthwhile spending a little time thinking carefully - it is understandable that you notice the times they do something that's risky for you but do you notice all the times they do take the precautions you need? Are there some things that are a matter of give and take (eg are you assuming you should be able to use the kitchen at any time rather than accepting that it might be a no-go zone until they've done the washing up?) Do you express gratitude for what they do? (I know in a sense you really shouldn't have to and that it is an extra burden on you but... eyes on the prize)
I'd say the angle could be "This is proving too hard for you, and I'm 28 and need my independence anyway, it would be best if I moved out" (I doubt they *want* you to die but I do think they could be worn out with thinking about it all the time and have given up) BUT does that put you into different danger perhaps: firstly from dealing with anaphylaxis alone (so you'd need to have that well researched and planned for) and also if there are things you need them to do in order to keep seeing them safely (which you want to do) might you be less aware of the 'transgressions' that might still affect you?
Who else is in your life? What issues will you have in supporting yourself living independently, physically and financially?
Consulting your medical team (and I do mean team rather than just a consultant or other doctor) and explaining the situation to get their take on it has to be appropriate next step (it might get you the documentation you need for suitable housing) That said I am honestly surprised if this conversation hasn't been had already and wonder why not. I am however less confident than Philippa that there's a gold standard reality to be determined here.
Phillipa unless you have access to the medical notes you need to take this woman at her word. If she has had 18 anaphylatic reactions and they are documented she should speak to to her consultant and he refer for a safeguarding review
But how likely is it she is living with parents who hope the next attack will kill her so they don’t have to deal with her anymore? Not all illnesses are physical and that does not make them any less serious.
Agree. But take her seriously FIRST. If it proves to be less serious FINE then address emotional issues. All hypochondriac die of something at some point.
I think Philippa is taking her seriously. She’s just not accepting her side of the story without question. That’s what a good therapist does - and in my experience it’s rare. Most will merely affirm their clients side of the story. And that helps no one.after all she apparently did not share her diagnosis with Philippa which perhaps tells us something.
It's not likely, but I can see why she thinks that. I have lived with and around serious allergy sufferers and illnesses my entire life and it has simply never occurred to me not to do something they've stated as a requirement for survival. Of course I am used to it, and there are times it is inconvenient, downright unpleasant, and a lot of emotional and physical labour. At points it has been impossible for me to do everything required so I have kept a physical distance to avoid triggering anaphylaxis.
But repeatedly not doing so must, to the person requiring it, feel extremely threatening, so I don't think her wondering this is at all suggestive of any psychological cause. She asked her parents to do something to keep her alive: they can't or won't. Wondering what their motives are is a fairly logical train of thought.
I'm writing this from the point of view of someone who has experienced anaphylactic shock - only once, mercifully, and in hospital, so medics were able to intervene and I didn't die. So I was alarmed when the LW says she's had 18 episodes of anaphylaxis in one year. I wondered what the spectrum of anaphylaxis is, so looked it up. Even mild symptoms can involve widespread hives, swelling of the face, lips/eyes, throat tightness, stomach pain, vomiting or diarrhoea. Moderate to severe involves airways and tongue swelling so you can't breathe, lips going blue, dramatic drop in blood pressure and cardiovascular collapse. That's when you get the crash team standing by with the paddles. I wouldn't even want the mildest symptoms on a regular basis (I'm not making any assumptions about how the LW is affected). But for the parents to minimise this and look down on people who seek help when they need it *is* very sad. Some of the reactions on this thread are also odd. Questioning why a 28yo is still living at home, for example. In this country renting is very difficult on many levels, from high rents to competition for rentals. I would like to send my best to the LW and say I'm sorry that some respondents are turning this around and 'putting this on you'. You *will* find what you need within you to get through this and I wish you all the best with finding people with expertise in this area to support you.
I feel for the writer massively she is in a dreadful situation (fearful and destructive) but I also feel for the parents --- and I don't think respondents here are "putting it all on her" but expecting her to share the burden of her illness where possible.
A little goodwill goes a LONG way - so if she were to buy a box of disposable gloves, or if she was to wait until they had cleaned up, or if she were to keep a set of cutlery in her room, or if she were to thank them for all the efforts they do already make instead of endless criticism and haranguing them for not doing enough/trying to kill her etc.
Then they would likely ALL be able to live together harmoniously.
In situations like these a "thank you" is HUGE.
Otherwise resentment really starts to grow. She says she doesn't wish to cut off her parents but in truth they may be relieved after so many years to have their own lives, their own home back. All it needs is some acknowledgement, cooperation and gratitude.
We simply don't know why the letter writer is living at home. It might be nothing to do with high rent or competition for rentals (in fact she mentions the difficulty of finding 'suitable' accommodation... which might mean no more than that it needs to affordable and not shared... or something else)
I can see it from both sides, it must be very difficult to live with the condition, and also very difficult to live with someone with the condition. You need to move out ASAP, but you are already trying that.
Is it possible to turn your bedroom into a bedsit and live more independently? Have your own food space and means of cooking it, separately to the family? It would mean significantly isolating yourself within the house, but if you moved out you would be separate anyway.
I would also take responsibility for wiping items such as the remote before use, not relying on other people to do it.
Agree that all of you meeting with medical professionals is a good way forward here. This letter reminds me of a time in my early 30s during cancer treatment, where it seemed logical that to get the short term care I needed, I left my own flat temporarily to live with my parents. It was just awful and I couldn’t wait to get home even if I was struggling.
For example they complained I “sat about too much” when unable to walk post chemo. I had awful side effects that we were told were coming but still a big surprise to them - and they argued about how to handle them over my head. At worst when I had a collapse waiting for an ambulance, they insisted that I should “just get up” causing me to repeatedly faint while they repeatedly jerked me.
I’m sharing these memories to say that parents can look to others like they are “doing their best” for their adult children when in fact they are causing more pain than good. Wishing the writer good health.
I think Philippa is right (and brave) to posit two potential realities and inadequate info here to discern which is true (or perhaps they are both somewhat true). Her letter is. compassionate and so if the LW does have exaggerated fear - or is finding a moderate/manageable risk very difficult to live with and responding by putting everyone on high alert - that just changes how to support her.
As someone with a serious allergy, whose parent then continued to cook, eat and powder the ingredient in the house, leading to a serious thankfully non-fatal reaction, I am really really sorry for the position you are in.
I was terrified for a long while and didn’t go stay with my family for over a year and now, years later, I bring my own food when I visit, or don’t stay for dinner.
It’s hard to comprehend that someone who loves you can endanger you in this way, yet it happens and I worry that people here questioning your reality will make you feel more alone.
Whenever I doubt myself I think about friends who will refuse to have any of these particular ingredient in the house incase I come to visit, and are horrified that there could be any other approach by family.
I hope you have similar examples to draw from, and wonder if there are other people in your life you can lean on or move to for a short while, while you gain calm and clarity.
In any case wishing you all the best and I hope you gain your freedom soon.
I feel something is missing from this letter. While the LW talks about precautions that her parents don't take to help prevent a reaction, it's not clear what role they do take when the LW has an anaphylactic episode. Do they help administer the epipen, lay her on her side, call 999? If her attacks lead to hospitalisation, have they visited her in hospital? Or do they stand by throughout all this and do nothing to help? If it's the latter then I can understand her concerns & her family situation seems very unhealthy. But the LW doesn't offer any clarification on this area and I feel more information here would be helpful.
I'd just add that I have no medical training so if what I've said isn't how an anaphylactic episode would be treated then please feel free to correct me.
No you first aid for anaphylaxis is bang on and I agree she makes no mention of any role her parents have of giving adrenaline getting her to hospital. Etc etc. I am very wary of not taking patients seriously who say they have anaphylaxis ( in case they die...) but with the amount response this thread has created has almost made me rethink that these 18 cases of anaphylaxis are fake. I am beginning to think a decent consultant would have admitted her to a specialist centre for some sort desensitisation treatment if available.
What an incredibly isolating and frustrating condition. It must feel like the whole world is against you when danger can be found in so many places. I think Philippa's advice is sensible and measured. I wonder if the LW will find it a little difficult to read though, so really I just want to send compassion and caring if she's reading this.
The writer needs a clear and accurate diagnosis and to have that and its consequences explained to her parents. The sooner that's done, the better.
Whether it's MCAS (as Rosie Grist suggests) or not apparently depends on whether more than one of her body's systems is affected; see eg https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome . Anaphylactic symptoms alone don't seem to support that diagnosis but the possibility should certainly be checked.
Meantime, she should take personal responsibility for doing more of the work to minimise her exposure to whatever appears to trigger her symptoms: doing all the essential cleaning she identifies and also, if necessary, catering and cooking for herself. Just asking people who are unwilling to take her fears seriously to take extra precautions simply isn't practical.
The Safeguarding Adults referral (that KathyC suggests) sounds sensible but may take longer than obtaining that medical diagnosis, so she needs to prioritise sensibly what external help she can obtain.
Oh what an impossible dilemma. The autoimmune reaction is very real (our bodies over react to threat) yet we know it is related to emotional triggers (see Gabor Matte). We also have learned from functional medicine that the causes are multi multi layered and need unpicking layer by layer (don't know her name but an american Doctor on YouTube and TED unpicks her illnesses - physical and mental).
The woman and her parents do need, as Philippa suggests, to talk about this because currently there is a lot of silent criticism going on both ways.
Philippa suggests a medical conference. I would also suggest a family therapist. Both systems need changing. But good luck - there is so little understanding/training of this interplay.
The letter writer describes a very damaging situation. Mentally and physically. Anaphylaxis can be life threatening and is defined as a medical emergency, requiring a shot of adrenaline and a call to 999. Having had 18 episodes already this year (and we are at the beginning of July so that’s more than one a fortnight) I am shocked that her doctors aren’t more concerned or haven’t queried the frequency.
For a parent to watch or find out about a life threatening circumstance and show little concern seems strange. And yes, they will have their own perspective but if the consequence on one side is life threatening and on the other side requires a more thorough cleaning process - then who is more at risk?
I would also add that when a serious medical condition is left unaddressed by a family then the person at risk needs to take control. As other comments have shared, an immune response is multi faceted and anaphylaxis involves a whole body reaction, which can keep the nervous system caught in fight or flight. This fight or flight response is internal, our nervous systems are hugely impacted by what we think and feel. If left unchecked we can find ourselves in a constant state of vigilance, which requires the equivalent of permanent risk assessment. Which can also lead to the gathering of evidence (and evidence of participation from those we love - especially whether they take the severity of consequences seriously). It sounds as though the letter writer’s parents are not taking the risks seriously and that is being translated as “they don’t care if I die.” Which must feel awful.
In reality, wanting a child to die is less likely to be true than they don’t fully understand (or do not want to take on the constant responsibility of keeping their daughter alive). But without being able to openly and honestly ask (and answer) the question, there can only be assumptions.
Though keeping the focus of control on the parents behaviour will (currently) always provide the evidence to suggest they don’t care and perpetuate the awful loop.
By taking the main responsibility for their own health and well-being and therefore having an internal (rather than external ) locus of control - if that’s the right term - the letter writer can start to have more agency in the situation rather than being at the mercy of it.
It must be utterly exhausting trying to prove that the threat is real, and one episode should have been enough let alone eighteen. So send the seriousness and compassion inwards. There are some amazing techniques available that can interrupt the fight flight loop (and some have already been mentioned in the comments). There are some amazing ‘before / after’ testimonials online from people who have turned their lives around. Some within the family and living environments that had originally contributed to their symptoms, others realising that their environments were massively impacting their symptoms and moving out was one of the key elements of their recovery (particularly where there was hidden black mould, which can have a huge impact on 25% of the population where the other 75% seem to tolerate the exposure relatively unscathed!)
Above all, I wish the LW well. I am so sorry that being unwell has lead you to question whether those you love, love you in return, and I really hope through Philippa’s wise words and the supportive comments you can find healthy ways to seek fresh approaches to the situation.
I agree with Philippa that a meeting with your medical team would be both helpful and wise…. And if your parents don’t want to do this you might want to consider asking for- or making one yourself- a Safeguarding Adults referral to your local social services department if you or your medical team think they are putting you at risk.. ( I’m a retired social worker and ex safeguarding adults board chair… and safeguarding adults is about both protecting people with care and support needs from the risk of, or actual, harm and abuse AND finding the outcomes they want). There is something complicated going on I would think, and it might need a multi disciplinary approach to sort it out and give you the help you need
I am a subscriber who shared this with my best friend who has MCAS. I’m posting this comment on her behalf:
Another MCAS person here (with the added joy of having a medical research background). I'm really sorry for what you're experiencing. To explain to others who find themselves here - the comment about her parents trying to kill her seems unreasonable. But what you have to remember is that inflammation is linked to psychiatry, and that being in a constant state of inflammation and in fight or flight, where you can never let your guard down, is going to have an impact on your interpretation of the world around you. If your parents are constantly putting you at risk, the inflamed brain thinks "what is the motive behind this?" And leaps to an extreme. One of the clues my husband has that I'm reacting to something is I experience psychosis and start thinking everything is against me. It resolves when I'm out of the environment where the allergen is. So if you have someone in an environment with 2 people who are being quite blazee about allergy triggers, there's probably low level allergy triggers everywhere, increased immune response, and increased psychiatric response. But LW has my utmost sympathy as it took a while for my immediate circle to accept my health had changed (I developed MCAS after an anaphylactic reaction to a known allergen) and that what I was experiencing was real. Thankfully 8 years in, they're supportive, and will take some steps to make their houses safer when I visit. I'd say - where possible, take control instead of expecting others to change. Buy a universal remote for the Tele and a differently coloured set of crockery and cutlery that only you use. Keep them in your room when not in use. This will hopefully minimize some of the contact allergies. MCAS is a rubbish and frustrating condition. Cos your body is in meltdown, and if it's not classical allergy (IgE mediated) then the NHS can't help. So you're left with mad amounts of histamine affecting your breathing, gut and skin, and not much support. If you drop the charity Mast Cell Action UK an email, they'll send out info and credible support groups that you can join to seek advice. Best of luck!
Great response, I'm so glad you posted this.
I know what you have it’s MCAS. I’m sorry Philippa has questioned your very real concerns by implying you’re over reacting. You’re not over reacting it’s very real and scary. I never had it to that severity but I did have it and now I don’t. I also have family members who think I’m barking mad and are dismissive. Also friends who think the same or say things like ‘don’t you think you’re over thinking it?’. It’s a very lonely place to be. I’m afraid there isn’t much you can do to convince anyone. You could try meeting your medical team with your parents but they still may find it an onerous task to do what is necessary. One thing I would suggest is looking seriously at any nutritional deficiencies because poor methylation does cause MCAS. And mine has resolved by fixing multiple deficiencies namely B vitamins especially B2 (which I need a lot of) and B12. I was on mast cell stabilisers for years before, now I’m not. Also there is a genuine problem with living in fear of one’s own body even if that fear is warranted. Because our nervous system is listening and interpreting everything. For example pain is created in the brain and the brain will increase pain based on the information it receives. If someone overly focuses on pain and worries the brain might think oh you need more pain. It’s the same with any anxiety and worry it can make symptoms worse, it can make the nervous system feel unsafe. I am in no way suggesting you made this up, there is science to support it. John Sarno wrote a great book on pain and how he helped his patients recover from long term pain conditions without drugs. There is a brilliant group called Rest, Repair, Recover by Suzy Bolt. Suzy recovered from long covid. I’ve attended workshops myself and they help you distinguish what might be a medical symptom that requires medical help and one that is a reaction by the nervous system that can be calmed. They do daily classes to help the nervous system. There are lots of people in these groups with MCAS too. It’s a community that will understand you. The work will help with the stresses you described which are very real. It doesn’t replace medical support it’s something to do alongside. I’m sorry I don’t have more advice on your parents but I came to the conclusion that I couldn’t force anyone to see my health issues if they weren’t open to it. I stopped trying to explain. Maybe your best bet is to move out so the tension isn’t there.
I don't think it's fair to present Philippa's framing that way. She presented two equally possible (based on the very little she knows) scenarios and is holding them gently and simultaneously until further information is forthcoming. Being able to hold different possibilities lightly is one of the key skills of a therapist
I also didn't particularly think any of what LW is asking for were that terrible or onerous, which is why I also felt it was a jump to question whether the suffering was ‘real’. Clean food up straight away and wipe something after you've used it? Ok maybe it's slightly more than most people do, but much less than (for example) healthcare workers did to protect their families during lockdown, or is routinely advised for people going through chemo. It felt like “I have a serious condition that required adjustments my parents are unwilling to make, how do I negotiate this” and didn't particularly seem to ring any alarm bells for panic. But also, panic would seem to be a reasonable response if you know things routinely found in your environment could kill you…
I think it's very interesting how people seem to think holding multiple possibilities concurrently and saying a conclusion can't be drawn without further evidence is in some way to degrade any one of those possibilities. It might be that multiple things are true - that precautions are needed, that the parents aren't taking the recommended precautions AND that the LW has an internal framing which is out of sync with objective reality (in as much as there is such a thing), AND it is possible that the two things could even be connected. Eg years of worrying about your existing health condition might cause anxiety out of proportion to the facts. The point is to be able to hold all possibilities with equal love and care until further medical evidence is discussed
I think if someone comes to you with 'I've got an illness which causes...' and has had 18 episodes of anaphylaxis then that's your starting point. As you say, Philippa isn't a doctor - so it's unclear to me why she's questioning a medical condition. We can make an educated assumption of what it's likely to be in answering the LW. What the underlying causes of that are and how much her mental health is affecting her view of it are different issues. I happen to think that questioning the LW's basic reality of what's going on isn't helpful in that cause.
It felt like there were 3 possibilities- the writer overreacting/parents underreacting/something more sinister. I thought it was interesting she veered more strongly to the first 2 despite the 18 episodes this year suggesting some tangible evidence against the first one
I didn't see the third possibility she raised - what are you referring to? I think the question this answer raises, quite deliberately given the title, is about how much of this is objectively true and how much may be an inner script that is divorced from reality. The clue to this being that there is a potential persecution phantasy about the LW's parents wanting them dead. And it really is a question, as in, something that needs to be answered. If the LW has indeed had 18 episodes this year, then their doctor can reiterate that to their parents and ensure that the severity is laid before them in a way the LW feels they don't appreciate currently. Etc.
I guess I saw the 3 options as: writer overreacting/parents being well intentioned but not always managing to keep on top of restrictions/parents deliberately not doing so, either to knowingly harm the writer (hopefully not) or because they don’t believe her. Mad as it sounds to me, I think you do get some people who don’t believe in things like food allergies and will deliberately ignore restrictions.
If the writer has the condition I think they have (MCAS) their caution about cross contamination is not unfounded.
The assumption that the writer is exaggerating their condition just feels a bit uncomfortably like women being ‘diagnosed’ with hysteria…
I don't think there were assumptions though that's my point. Two possibilities are raised and each held equally until further evidence is found. That's the opposite of assumption.
I don’t see any assumption being made by Philippa here. She is actually holding each possibility equally in my opinion.
I can endorse Suzy Bolt’s work, my son has a chronic condition first misdiagnosed as Long Covid, is in reality a chronic form of Lyme’s disease with similar symptoms, and has found Suzy’s approach invaluable. It was suggested by a senior consultant at University College Hospital who refers his patients to her courses.
Indeed. I caught a virus that didn’t immediately produce symptoms but attacked my central nervous system. The physical impacts and mental health repercussions were daunting. My body overreacted to all sorts of things. A specialist neurologist in that particular field will/would write a report as to your needs, or one who specifically deals with your diagnosis. Your parents could attend a meeting with you if you so wish. I wish you some form of support external to your home situation and a greater understanding. I was blanked by many people as it was before Covid. People come up to me post Covid and apologise on occasion. It’s hard to understand for them
I cannot help but feel there is some allergy misinformation here. I wonder what her response would have been had LW articulated an immunosuppressed condition that is much better understood (like leukemia/type 1 diabetes/chemotherapy). Would such conditions have produced a title of “Whose Reality Is It Anyway?” - I suspect not, despite anaphylaxis being no less life threatening.
Assuming 18 anaphylactic reactions is true, and there is no reason to think it is not, then that is clear evidence of both a medical condition and experiences that would be traumatic and make someone terrified of recurrence. One would assume loving parents would take that very seriously and meaningfully want to prevent any triggers. I agree that the parents need to be engaged with her medical team and all be aware of a feasible and considered care plan. Many families do undermine and invalidate one family members real medical condition, especially if it is rare or misunderstood. I experienced it when I had hyperemesis (severe pregnancy sickness), there was an undercurrent that I was overreacting. In this respect, I think it is vitally important to validate the letter writer’s experience.
I think I might come at this from a slightly different angle (without much difference in what actions might be the way forward)
Unlike others, I can't assume I know what this illness is, precisely, because the immune system can go wrong in so many individual ways and I'd be interested in how professionals have responded to these 18 episodes of anaphylaxis and indeed how have your parents reacted at the time - are you eg getting the signs of a reaction, taking medication and that's it, crisis avoided (would your doctors say you've had 18 episodes of anaphylaxis?) or is this involving trips to hospital in which they are involved?
Your parents are clearly unwilling to change their own lives - and I think we need to be upfront that the changes *are* onerous, it's a massive cognitive load, even if they were totally on board ....and I am very confident this can be a factor in denial - we don't *want* it to be true you need this and people get funny about precautions that don't even affect them (eg mask wearing). It's also turned the dynamic around - this is their home and typically even though the child might have become an adult, the parents tend to be 'in charge' to some degree, and you are now dictating how they live in their own home. It might be worthwhile spending a little time thinking carefully - it is understandable that you notice the times they do something that's risky for you but do you notice all the times they do take the precautions you need? Are there some things that are a matter of give and take (eg are you assuming you should be able to use the kitchen at any time rather than accepting that it might be a no-go zone until they've done the washing up?) Do you express gratitude for what they do? (I know in a sense you really shouldn't have to and that it is an extra burden on you but... eyes on the prize)
I'd say the angle could be "This is proving too hard for you, and I'm 28 and need my independence anyway, it would be best if I moved out" (I doubt they *want* you to die but I do think they could be worn out with thinking about it all the time and have given up) BUT does that put you into different danger perhaps: firstly from dealing with anaphylaxis alone (so you'd need to have that well researched and planned for) and also if there are things you need them to do in order to keep seeing them safely (which you want to do) might you be less aware of the 'transgressions' that might still affect you?
Who else is in your life? What issues will you have in supporting yourself living independently, physically and financially?
Consulting your medical team (and I do mean team rather than just a consultant or other doctor) and explaining the situation to get their take on it has to be appropriate next step (it might get you the documentation you need for suitable housing) That said I am honestly surprised if this conversation hasn't been had already and wonder why not. I am however less confident than Philippa that there's a gold standard reality to be determined here.
Phillipa unless you have access to the medical notes you need to take this woman at her word. If she has had 18 anaphylatic reactions and they are documented she should speak to to her consultant and he refer for a safeguarding review
But how likely is it she is living with parents who hope the next attack will kill her so they don’t have to deal with her anymore? Not all illnesses are physical and that does not make them any less serious.
Agree. But take her seriously FIRST. If it proves to be less serious FINE then address emotional issues. All hypochondriac die of something at some point.
I think Philippa is taking her seriously. She’s just not accepting her side of the story without question. That’s what a good therapist does - and in my experience it’s rare. Most will merely affirm their clients side of the story. And that helps no one.after all she apparently did not share her diagnosis with Philippa which perhaps tells us something.
It's not likely, but I can see why she thinks that. I have lived with and around serious allergy sufferers and illnesses my entire life and it has simply never occurred to me not to do something they've stated as a requirement for survival. Of course I am used to it, and there are times it is inconvenient, downright unpleasant, and a lot of emotional and physical labour. At points it has been impossible for me to do everything required so I have kept a physical distance to avoid triggering anaphylaxis.
But repeatedly not doing so must, to the person requiring it, feel extremely threatening, so I don't think her wondering this is at all suggestive of any psychological cause. She asked her parents to do something to keep her alive: they can't or won't. Wondering what their motives are is a fairly logical train of thought.
I'm writing this from the point of view of someone who has experienced anaphylactic shock - only once, mercifully, and in hospital, so medics were able to intervene and I didn't die. So I was alarmed when the LW says she's had 18 episodes of anaphylaxis in one year. I wondered what the spectrum of anaphylaxis is, so looked it up. Even mild symptoms can involve widespread hives, swelling of the face, lips/eyes, throat tightness, stomach pain, vomiting or diarrhoea. Moderate to severe involves airways and tongue swelling so you can't breathe, lips going blue, dramatic drop in blood pressure and cardiovascular collapse. That's when you get the crash team standing by with the paddles. I wouldn't even want the mildest symptoms on a regular basis (I'm not making any assumptions about how the LW is affected). But for the parents to minimise this and look down on people who seek help when they need it *is* very sad. Some of the reactions on this thread are also odd. Questioning why a 28yo is still living at home, for example. In this country renting is very difficult on many levels, from high rents to competition for rentals. I would like to send my best to the LW and say I'm sorry that some respondents are turning this around and 'putting this on you'. You *will* find what you need within you to get through this and I wish you all the best with finding people with expertise in this area to support you.
I feel for the writer massively she is in a dreadful situation (fearful and destructive) but I also feel for the parents --- and I don't think respondents here are "putting it all on her" but expecting her to share the burden of her illness where possible.
A little goodwill goes a LONG way - so if she were to buy a box of disposable gloves, or if she was to wait until they had cleaned up, or if she were to keep a set of cutlery in her room, or if she were to thank them for all the efforts they do already make instead of endless criticism and haranguing them for not doing enough/trying to kill her etc.
Then they would likely ALL be able to live together harmoniously.
In situations like these a "thank you" is HUGE.
Otherwise resentment really starts to grow. She says she doesn't wish to cut off her parents but in truth they may be relieved after so many years to have their own lives, their own home back. All it needs is some acknowledgement, cooperation and gratitude.
We simply don't know why the letter writer is living at home. It might be nothing to do with high rent or competition for rentals (in fact she mentions the difficulty of finding 'suitable' accommodation... which might mean no more than that it needs to affordable and not shared... or something else)
I can see it from both sides, it must be very difficult to live with the condition, and also very difficult to live with someone with the condition. You need to move out ASAP, but you are already trying that.
Is it possible to turn your bedroom into a bedsit and live more independently? Have your own food space and means of cooking it, separately to the family? It would mean significantly isolating yourself within the house, but if you moved out you would be separate anyway.
I would also take responsibility for wiping items such as the remote before use, not relying on other people to do it.
Agree that all of you meeting with medical professionals is a good way forward here. This letter reminds me of a time in my early 30s during cancer treatment, where it seemed logical that to get the short term care I needed, I left my own flat temporarily to live with my parents. It was just awful and I couldn’t wait to get home even if I was struggling.
For example they complained I “sat about too much” when unable to walk post chemo. I had awful side effects that we were told were coming but still a big surprise to them - and they argued about how to handle them over my head. At worst when I had a collapse waiting for an ambulance, they insisted that I should “just get up” causing me to repeatedly faint while they repeatedly jerked me.
I’m sharing these memories to say that parents can look to others like they are “doing their best” for their adult children when in fact they are causing more pain than good. Wishing the writer good health.
I think Philippa is right (and brave) to posit two potential realities and inadequate info here to discern which is true (or perhaps they are both somewhat true). Her letter is. compassionate and so if the LW does have exaggerated fear - or is finding a moderate/manageable risk very difficult to live with and responding by putting everyone on high alert - that just changes how to support her.
As someone with a serious allergy, whose parent then continued to cook, eat and powder the ingredient in the house, leading to a serious thankfully non-fatal reaction, I am really really sorry for the position you are in.
I was terrified for a long while and didn’t go stay with my family for over a year and now, years later, I bring my own food when I visit, or don’t stay for dinner.
It’s hard to comprehend that someone who loves you can endanger you in this way, yet it happens and I worry that people here questioning your reality will make you feel more alone.
Whenever I doubt myself I think about friends who will refuse to have any of these particular ingredient in the house incase I come to visit, and are horrified that there could be any other approach by family.
I hope you have similar examples to draw from, and wonder if there are other people in your life you can lean on or move to for a short while, while you gain calm and clarity.
In any case wishing you all the best and I hope you gain your freedom soon.
I feel something is missing from this letter. While the LW talks about precautions that her parents don't take to help prevent a reaction, it's not clear what role they do take when the LW has an anaphylactic episode. Do they help administer the epipen, lay her on her side, call 999? If her attacks lead to hospitalisation, have they visited her in hospital? Or do they stand by throughout all this and do nothing to help? If it's the latter then I can understand her concerns & her family situation seems very unhealthy. But the LW doesn't offer any clarification on this area and I feel more information here would be helpful.
I'd just add that I have no medical training so if what I've said isn't how an anaphylactic episode would be treated then please feel free to correct me.
why doesn't the LW wear gloves when touching things like the TV remote?
No you first aid for anaphylaxis is bang on and I agree she makes no mention of any role her parents have of giving adrenaline getting her to hospital. Etc etc. I am very wary of not taking patients seriously who say they have anaphylaxis ( in case they die...) but with the amount response this thread has created has almost made me rethink that these 18 cases of anaphylaxis are fake. I am beginning to think a decent consultant would have admitted her to a specialist centre for some sort desensitisation treatment if available.
What an incredibly isolating and frustrating condition. It must feel like the whole world is against you when danger can be found in so many places. I think Philippa's advice is sensible and measured. I wonder if the LW will find it a little difficult to read though, so really I just want to send compassion and caring if she's reading this.
The writer needs a clear and accurate diagnosis and to have that and its consequences explained to her parents. The sooner that's done, the better.
Whether it's MCAS (as Rosie Grist suggests) or not apparently depends on whether more than one of her body's systems is affected; see eg https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome . Anaphylactic symptoms alone don't seem to support that diagnosis but the possibility should certainly be checked.
Meantime, she should take personal responsibility for doing more of the work to minimise her exposure to whatever appears to trigger her symptoms: doing all the essential cleaning she identifies and also, if necessary, catering and cooking for herself. Just asking people who are unwilling to take her fears seriously to take extra precautions simply isn't practical.
The Safeguarding Adults referral (that KathyC suggests) sounds sensible but may take longer than obtaining that medical diagnosis, so she needs to prioritise sensibly what external help she can obtain.
Oh what an impossible dilemma. The autoimmune reaction is very real (our bodies over react to threat) yet we know it is related to emotional triggers (see Gabor Matte). We also have learned from functional medicine that the causes are multi multi layered and need unpicking layer by layer (don't know her name but an american Doctor on YouTube and TED unpicks her illnesses - physical and mental).
The woman and her parents do need, as Philippa suggests, to talk about this because currently there is a lot of silent criticism going on both ways.
Philippa suggests a medical conference. I would also suggest a family therapist. Both systems need changing. But good luck - there is so little understanding/training of this interplay.
Reply Edit
The letter writer describes a very damaging situation. Mentally and physically. Anaphylaxis can be life threatening and is defined as a medical emergency, requiring a shot of adrenaline and a call to 999. Having had 18 episodes already this year (and we are at the beginning of July so that’s more than one a fortnight) I am shocked that her doctors aren’t more concerned or haven’t queried the frequency.
For a parent to watch or find out about a life threatening circumstance and show little concern seems strange. And yes, they will have their own perspective but if the consequence on one side is life threatening and on the other side requires a more thorough cleaning process - then who is more at risk?
I would also add that when a serious medical condition is left unaddressed by a family then the person at risk needs to take control. As other comments have shared, an immune response is multi faceted and anaphylaxis involves a whole body reaction, which can keep the nervous system caught in fight or flight. This fight or flight response is internal, our nervous systems are hugely impacted by what we think and feel. If left unchecked we can find ourselves in a constant state of vigilance, which requires the equivalent of permanent risk assessment. Which can also lead to the gathering of evidence (and evidence of participation from those we love - especially whether they take the severity of consequences seriously). It sounds as though the letter writer’s parents are not taking the risks seriously and that is being translated as “they don’t care if I die.” Which must feel awful.
In reality, wanting a child to die is less likely to be true than they don’t fully understand (or do not want to take on the constant responsibility of keeping their daughter alive). But without being able to openly and honestly ask (and answer) the question, there can only be assumptions.
Though keeping the focus of control on the parents behaviour will (currently) always provide the evidence to suggest they don’t care and perpetuate the awful loop.
By taking the main responsibility for their own health and well-being and therefore having an internal (rather than external ) locus of control - if that’s the right term - the letter writer can start to have more agency in the situation rather than being at the mercy of it.
It must be utterly exhausting trying to prove that the threat is real, and one episode should have been enough let alone eighteen. So send the seriousness and compassion inwards. There are some amazing techniques available that can interrupt the fight flight loop (and some have already been mentioned in the comments). There are some amazing ‘before / after’ testimonials online from people who have turned their lives around. Some within the family and living environments that had originally contributed to their symptoms, others realising that their environments were massively impacting their symptoms and moving out was one of the key elements of their recovery (particularly where there was hidden black mould, which can have a huge impact on 25% of the population where the other 75% seem to tolerate the exposure relatively unscathed!)
Above all, I wish the LW well. I am so sorry that being unwell has lead you to question whether those you love, love you in return, and I really hope through Philippa’s wise words and the supportive comments you can find healthy ways to seek fresh approaches to the situation.