The Unspoken Symptoms – #truth #advocacy #revealing #fear #embarrassing #respect #support #Autoimmune #Chroniclife

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.

Gentle hugs,

Trish

6 thoughts on “The Unspoken Symptoms – #truth #advocacy #revealing #fear #embarrassing #respect #support #Autoimmune #Chroniclife

  1. I am saving to reblog as well.
    Yes, I understand.
    A lupus flare hit this week. You would think my hubby would at least understand.
    He says I haven’t been there for him.
    Not sure what he could possibly mean except, I haven’t been UP.
    He has had his meals ready. His lunches ready the night before. I have been up every morning and at the door every night waiting for him to leave/to come home. Snacks are waiting on the table. His ice tea is ready.
    The smile may be fake but it’s the best I can do.
    Not once has he asked me if I needed anything.

    I even make his coffee like I always do even though I hate the smell.
    And I am not there for him.
    Sad.

    Like

    1. I don’t have words but hugs and empathy. So many of us would love to send our respect and empathy. Xx I hope that you do have support and understanding in your life and you will always find it here xx

      Liked by 1 person

      1. Trish,
        My family has always been there. They live in Illinois. I don’t let them know as much as I should. They are just too far away.
        I don’t really have any support here except for one real nice lady who works in our Ranger Station.
        I get a few “hope you feel better” or “We don’t see much of you any more”…
        A lot of it is my fault……I have shut down and withdrawn for park staff They were just to draining.
        Danny is having enough trouble working with them right now….
        Too much “In House” fighting.
        We live and work at a state park.
        So it’s easier for me to stay at home and not interact with them….
        Trish,
        I want to start reading your blog from the start and will do that ASAP.
        I need to start sharing more of what I am feeling .
        When I said I understand earlier…..I meant…..I understood as much as I am able to.
        I have used a wheelchair….in the house…In the hospital. I have never had to use it in public like you have.
        The thought terrifies me.
        They (meaning the average person) will never understand and many of them don’t what to.
        Sending hugs to you.
        Sarah
        I would like to repost this sometime soon if you don’t mind.

        Like

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