It is probably the one and only thing that never gets spoken about… not even amongst Autoimmunes. Its taboo, and for many reasons. Here is what I mean.
Whenever I plan an outing I try to imagine every possible scenario or challenge that might arise and I try to prepare accordingly. I carry a Tote bag around that is filled to the brim with all types of items that I might require. Tissues, Wipes, vomit bags, pain relief, compression gloves, change of clothes, eye drops, bottled water, hand sanitizer etc
However as I move around in the wheelchair the unseen symptom that I carry with me is embarrassment. Yes, I realise I have done nothing that I should feel embarrassed about; but I do.
When I have to be rushed to the toilet or I will wet myself, I feel embarrassed. When I wear my pirate eye patch I little children stare at me and laugh (innocently) I feel embarrassed. When I was sick all over myself, it was upsetting and embarrassing. So many times I have had to leave a cafe, a movie, a recital because my tremor makes me looks quite comical or at least freakish. Embarrassment is the factor that my GP, specialist and medical advisers will NEVER talk about or inquire about because it is meaningless to everyone else but me. Its only happening to me.
If my pain is so great sometimes that I start crying when we are out in public, no one will make eye contact with you and you want the earth to open up and swallow you. You aren’t supposed to cry in front of strangers (or even doctors) because it makes THEM feel uncomfortable and it is very embarrassing for the person who is in pain; me.
Whenever I have raised this anonymously within support groups I will always get the reassurances of “no, its not you… its OK… don’t worry… just forget it and move on… it’s all going to be OK.” Which of course my head knows is true. And I do go on. And I do go out again. But it DOES happen. I do STILL feel it. It’s not a failing on my behalf, its the reality that this world does not want to see a grown woman shake and spasm in her wheelchair. The world doesn’t want to see a seemingly intelligent woman or friend wet herself or limp and sway like an old drunken lady. These are things that I may have no control over no how hard I try, but they are not publicly embraced either. I don’t sense that people are thinking “How would I feel if it happened to me?” or “What can I do to make her feel more at ease?” No. Its quite shocking and surprising and that is why I am so embarrassed.
Due to many reasons like lack of information and understanding, the public doesn’t know what challenges are taking place and I try desperately to hide them so I fit in more. So I don’t feel embarrassed. There are many times when I will NOT go out or leave the house due to these factors and many, many more.
Recently a flare of IBD meant that I barely left the toilet for weeks. I think you can imagine what happens when you mix explosive bowels with the inability to walk or move quickly… Embarrassing. My GP wanted me to come to the practice and wait the hour and a half it takes in the waiting room to see her. So I don’t go. So I suffer at home and risk further pain and infection.
The unspoken aspects of these illnesses are often some of the worst. And then there is another more awful than what I have already explained. It is what no one wants to hear and no one has answers for. The Fear.
The fear of what lies ahead for us if, or when, our illnesses progress can be truly indescribable and so we rarely talk about it, even amongst ourselves. Support groups try to keep the mood very optimistic and positive, which is helpful in some ways and yet isolating in others.
The fear of “what if…” can drive us into madness if we let our thoughts go there for long. I have had some people try and be consoling by saying “…we could all fall under a bus tomorrow…” but those sort of odds are remote at best yet, the percentages of Autoimmunes who experience progression or co-mobility problems are measurable and quite scary… if you think about them and research them. Only people who ACTUALLY have these diseases are ever likely to have researched them and so sadly we arrive back at the problem of embarrassment and isolation.
What can be done? Well a cure would be nice! Someone finding a cure that will remove, reverse and relieve sufferers of their chronic, often progressive and frequently disabling and painful diseases. Until then, I would like to advocate and educate others so that the public, strangers, friends, family and the specialists themselves can understand some of the ‘unspoken’ symptoms of these diseases and the unknown suffering that they cause.