Whose Reality Is It Anyway?
When illness, fear and family collide, how do you decide what is danger and what is dread?
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I (28F) have an illness where my immune system mistakes all kinds of things for allergens and sends me into anaphylaxis. I have had eighteen anaphylactic episodes this year. My parents, who I live with, are constantly exposing me to my triggers and refuse to make small changes to avoid this (e.g. washing hands immediately after eating, eating trigger foods away from me, cleaning up in the kitchen when finished and not hours later). Whenever I say “I now can’t eat that because you have used a spoon that touched an anaphylaxis trigger” or “Can you please clean the TV remote now that you have touched it immediately after eating a sandwich so that I can use it later?” they respond as if I am overreacting, despite them having witnessed these very things trigger anaphylaxis in the past.
They have all the information available to them to see that they are causing me great harm and endangering my life, but would prefer to delude themselves that I am overreacting instead of accepting that they have done something harmful. This is part of a wider problem for them both. It is damaging our relationship immensely and putting me in physical danger.
It is now starting to feel like they are deliberately not trying in the hope that one of these anaphylactic episodes will kill me and they won’t have to deal with the responsibility of keeping me alive anymore.
I am desperately making plans to permanently leave the household, but this is not likely to happen for 8 months at the very earliest as my condition means that many properties are unsuitable.
How do I get through to them that I need their support? They will not accept that they are doing anything wrong, and will not consider family counselling as they look down on counselling and people who seek it. I am in counselling without their knowledge and am aware that I will need extensive counselling once I have escaped this environment, but I don’t want to have to sever our relationship. They are my parents and I love them. I need them to work with me to keep me alive until I can leave, and I would like to maintain a relationship with them once I do. How can I possibly achieve this?
My Reply
I found this a difficult letter to answer because there seem to be two very different possibilities and I do not know which one I am looking at.
The first possibility is that you have a severe and unusual medical condition and your parents are failing to take precautions that your doctors have advised are necessary to keep you safe. If that is the case then I can understand your fear, anger and sense of betrayal. It is hard to feel loved by people who appear not to be taking your safety seriously.
The second possibility is that your fears about contamination and exposure have become much greater than the actual medical risks involved and that your parents experience some of your requests as impossible to satisfy or increasingly expansive in scope.
There is perhaps a clue in your fear that your parents may be hoping one of these episodes will kill you, so they no longer have to deal with the responsibility of keeping you alive. That is an extraordinarily painful thought to carry, and I wondered whether it might be worth examining carefully rather than accepting immediately as fact.
What do your doctors think about the precautions you are asking for? Would they consider your parents’ behaviour dangerous or your requests reasonable? Would they be willing to meet with all of you together and set out clearly what is medically necessary and what is not?
Because I suspect what is needed here is not your parents agreeing with your fears or dismissing them, but an external reality that all three of you can trust, so that would mean a meeting with someone on your medical team, a nurse or a doctor, not a counsellor.
You write about leaving home and I found myself wondering whether that conversation with your medical team needs to happen before decisions about moving out are made. If your parents really are putting your health at risk, then greater independence may ultimately become part of the solution. But if your fears about contamination have grown beyond what your doctors believe is medically necessary, then living alone might leave you carrying those fears without anybody around to help you reality-test them.
What struck me was that despite everything you still say, “They are my parents and I love them.” That suggests to me that part of you still believes there is a relationship worth preserving if only the three of you could agree on what reality looks like.
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 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.