My Experiences of Living with Chronic Conditions. Part One.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

The beginning.

I, obviously, don’t remember being born, but I remember being told that, when I was born, my bottom was raw. 

I was told that I used to get a bad nappy rash frequently. Over the years, cuts and scrapes were always far worse than the accident warranted. Following activity, and whenever I got hot, my feet would blister.

Because we’re told not to pop blisters, as that increases the risk of infection, mine would get bigger and bigger, engulfing all of my toes, or my entire heel. The skin on my hands would frequently be sore. When I had fixed braces, my mouth was covered in, what were thought to be, ulcers. The slightest exertion would make me sweat, which I always found incredibly embarrassing, concerned people would judge me for being unfit. That added to the embarrassment of walking around like a constipated chicken because of my blistered feet a large part of the time.  

On the rare occasion (more about that another time) I was taken to the doctor about it all, I was misdiagnosed. I got diagnosed with a few different types of eczema (one where I was told to soak my feet in potassium permanganate, resulting in brown stained feet and nails!); I got told the skin on my feet was too soft; I got told the skin was too hard; I got told I was allergic to my own sweat (which added to the embarrassment of sweating so much already; I felt it was all my fault). 

During the summer, I would end up wearing cheap men’s flip flops, as my feet got too swollen for women’s shoes, even though gripping the flip flops caused more blisters. When I was alone, and not likely to get told off, I would go barefoot as often as possible, even outside.

Once I left home, I could take myself to the doctor; I saw several, each giving a different diagnosis. Nothing they prescribed helped. Then I got referred to a dermatologist at Chelsea and Westminster Hospital. I sat down, showed him my feet, and he said, “You have Epidermolysis Bullosa Simplex Weber-Cockayne!”. In my usual eloquent fashion, I responded with, “Huh?” He said my feet were such a good example of EB (much easier to say than Epidermolysis Bullosa) that he sent me to the photography lab; my feet are in a medical journal!  

I began to learn more about the condition. The NHS explanation of EB, and the symptoms they state, are:

Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters.

The main symptoms of all types of EB include:

1. skin that blisters easily

2. blisters inside the mouth

3. blisters on the hands and soles of the feet

4. scarred skin, sometimes with small white spots called milia

5. thickened skin and nails

Even though it is a genetic condition, I am the only one in my family with it; I am a mutant; I am still waiting for Wolverine (well, Hugh Jackman; can you imagine the damage those claws could do to my fragile skin?! 😉 ) to come calling. 

I have learned that there are several varieties of EB; mine is one of the “lesser” ones; I say lesser; even in its lesser forms, it still affects every level of our lives. Here are some of the ways it affects me:

1. I have to be very careful about what I eat. I can’t eat anything spicy, peppery, acidic, hard or sharp. That means I can’t eat most salad leaves (too peppery); I can’t eat most fruit (too acidic); I shouldn’t eat crisps or hard sweets. The spicy, peppery and acidic foods cause my mouth to blister; the hard and sharp foods tear my mouth. Sometimes, my throat can blister too. Any blistering or tears makes any eating difficult and painful.

1. My hands. If I hold a pen or pencil for too long, my skin shears. Opening up bottle tops causes my hands to shear. Wearing rings can create raw patches. If I iron, my hands shear and blister (obviously, a great reason to not bother 😉 ). Holding anything for any period of time, such as knives, potato peelers, most kitchen implements, causes the skin on my palms to become raw.

2. Shoes. I have to think carefully about the shoes I wear; heat and friction are causes of my blisters, so I can’t wear shoes that will make my feet too hot; I can’t wear shoes that have too many straps or edges (it’s so painful taking shoes off when blisters have formed around straps). I can’t wear shoes that put pressure on a particular point of my foot. Well, that should be “I shouldn’t wear”; I do love a good pair of high heels every now and then, but I do suffer for it.

3. My feet. Do you know how uncomfortable it is to get a stone in your shoe? My feet feel like that most of the time. Generally, my feet feel like I have stones under the skin; on bad days, it feels like my skin has been torn open with a rusty razor blade, had lava shoved in, then sewn back up with a blunt needle. This makes walking on any ground hard but it’s especially hard on uneven ground, shingle, pebbles and other rough ground.

4. Itching. My skin itches  All. Of. The. Time. Sometimes, I can ignore it, maybe just having a good scratch now and then; when it’s bad, I would happily tear my skin off and rub it vigorously on a cheese grater. 

5. My body. Although it’s mostly my mouth, hands and feet that are affected by my EB, I can blister anywhere; anywhere where there is any heat and/or friction.

A reminder: I only have a “mild” version of EB. 

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

Vie

xx