Having life threatening allergies has always left me feeling a little on the outside of life. Given that my most severe allergy (non medication) is to citrus fruit it’s impossible for me to just go anywhere without careful planning. I can’t just drop in on a friend, in case they had fresh orange juice for breakfast that morning. I can’t attend a social event at a colleague’s home without having a detailed discussion first. To be honest it’s often easier to just give my apologies and run the risk of others thinking that I’m not interested in socializing than going through the whole explanation each time.
Meeting at restaurants can be easier but even then I have to ask that nobody has fresh lemon as a garnish on their drink or squeezed over any fish. If the tables aren’t far enough apart and people at another table have citrus I may have to act quickly and self-medicate and on some occasions leave entirely. Walking out in the middle of a meal, without explanation, doesn’t go down well.
With RADS, my allergies have become even more sensitive. So situations that I used to be able to manage are now not safe for me and I have much less time to react than I used to.
As a result my allergies are now being considered a disability by my health care providers and consequently they’re working hard to accommodate me. My recent anaphylactic reaction at my ENT appointment has had significant consequences.
As a direct result of this, all my future appointments are being rescheduled to being the first of the day. Other providers are already doing this with me. The rationale being that there will be fewer patients in the waiting room which the providers can’t control in terms of their having recently eaten citrus, or even eating/drinking it while they’re waiting for their own appointments. By scheduling me first I should only be exposed to my own healthcare providers who are very well-informed as to my extreme sensitivities.
Don’t get me wrong, I really do appreciate this and all the extra effort being taken. Anaphylaxis can kill within minutes and they tend to get worse the more reactions that you have. Which certainly seems to be the case for me.
The problem is that disability accommodation in this context feels like exclusion. It’s not. Not seeing me at all would be exclusion. However, my emotions don’t always feel logical.
I truly understand the risks both for me personally, and for healthcare providers if they don’t do all that they can to make the environment safe for me now that they know of my allergies.
It is interesting though how different the response is after they’ve seen it for themselves. Literally as I’ve experienced anaphylaxis in different provider’s offices they tighten up on the appropriate precautions.
Is it that they don’t believe me until they see it for themselves? I do wonder about this as I know from experience that many people say that they are allergic to foods that they just don’t like, or that gives them an upset tummy. Both of which are not pleasant but not life threatening.
The other consequence of having to be scheduled for the first appointment of the day is that it can take longer to actually get an appointment. Though that get’s better with providers that I see often as they prioritize me for those early appointments.
Being housebound, 99% of the time, to avoid allergens feels pretty much like exclusion already. When medical appointments are the only time that you leave your home it also feels much like exclusion when those appointments now have to be scheduled specifically so that I avoid as many people as possible.
I have to keep reminding myself that it’s not about exclusion; it really is about being kept safe.
I just hope that with time the impact of RADS diminishes and I can tolerate minimal exposure to allergens again.
The thought of living this way for the rest of my life does not appeal!