Sept 10 – 16 is National Invisible Illness Awareness Week. I have been checking out the great info on Invisible Illness Awareness here and have been making plans on how to ‘celebrate’ next week. I plan on sharing some of the great info they have on my facebook page and here on my blog all next week – they have some great ideas on how to communicate about life with an invisible illness.
In the meantime, the reality of living with an invisible illness – and how it complicates normal everyday life – has been on my mind…
My 90 year old grandmother died this week and we attended her funeral – on a very hot, ridiculously humid day. And, as a result, Em became my main concern – how would she manage? My daughter’s invisible illness made a hard day harder in so many ways:
- Living with an invisible illness means worrying about what you wear to a funeral. Not that the color will be inappropriate but, instead how you can dress to minimize the temperature fluctuations that come from autonomic dysfunction on a day that has [no exaggeration] 99% humidity. The outfit must not make you overheat, but it also must cover you enough that you don’t chill and a bonus would be that it looks good in the doing, while being appropriately dressy. Let me assure you, this is no small feat and with a teenager who cares how she looks, it is nearly impossible. And don’t even get me started about the shoes. Seriously, shoes will be the end of me someday, just wait and see!
- Living with an invisible illness means needing a wheelchair, but opting not to use it because it will hurt more to sit in it for the hours you are at the church than it will to just walk around and try to find a comfortable seat. It also involves a certain amount of pride that causes a 13 year old to not want to be the only other person in a wheelchair besides her 90 year old great grandfather. Go figure.
- Living with an invisible illness means that, since said 13 year old chooses not to use her wheelchair, she looks perfectly fine to all of the family she has not seen since she got ill and you know they are thinking how her mother is obviously exaggerating her illness. If there even is one. Sigh.
- Living with an invisible illness means worrying that you will not be able to eat anything at the funeral dinner afterwards. When you have food sensitivities and eat only a handful of foods, eating out is a major stumbling block. The solution, bring your own snacks to a funeral – not a normal thing to do perhaps, but, let’s face it, we left normal in the rear view mirror years ago.
- Living with an invisible illness means when you need to get up early for a funeral, your meds schedule (not to mention your sleep schedule) is disrupted and that is not a good thing. You juggle the schedule, hoping to be able to arrange your meds to be taken at the most convenient time and hoping that they won’t wear off when you need them most. Just what you want to be thinking about at a funeral for a loved one…
- Living with an invisible illness means being really, REALLY aware of your upcoming doctor appointments and quietly praying that you don’t have to reschedule or, heaven forbid, choose between that terribly necessary appointment and the funeral that is being planned.
- Living with an invisible illness means no one can see the strain or the stress and what it does to you, so they might tend to think you (or your mother) are overreacting if you mention it. So, you try to hide it and put on a facade that everything is fine, which is stressful in and of itself. When you are told over and over, ‘But, she looks so GOOD!’ , you sometimes don’t bother to point out how she is running on adrenaline and will pay for it dearly, because they can’t possibly understand anyway.
All that being said, Em did pretty well and managed the day better than I expected – she is a trooper, after all. She was predictably exhausted and done in for a day or two but generally handled the stress of the day well. We are very fortunate to have family who ‘gets’ it and supports us in whatever happens. That is something that makes this life with an invisible illness a bit easier to deal with and, on a difficult day, that is something to be very grateful for.