My blog wouldn’t have eventuated without the kind guidance and support of two incredible women who have their own successful blogs. Without a doubt, it is their own experiences with health issues and life challenges that have meant they have seen the potential and helped me achieve my long-held goal of writing a blog about my mental health experiences.
Catherine began sharing her experience of her rare disease with me and I saw parallels with my own experience of mental illness. The confrontation of having an illness others don’t understand, coming to terms with a chronic illness, the intrusion of health professionals in your life.
In sharing Catherine’s experience I would like to highlight how those with mental illness can feel solidarity with others who share stigmatisation and face daily struggles.
Catherine is generously sharing some of her story with us here. In this first post, Catherine explains the symptoms of her disease and diagnosis, as well as coming to terms with the reality of her illness.
I still remember the brief phone conversation I had with my doctor the day before Good Friday: “You’ve got Linear IGA, there’s lots of information on the internet about it. I’ll fax you a script for dapsone and keep taking the prednisone with it.”
This was the result of the skin biopsy I’d done the week before. My skin had been breaking out in blisters which would then burst and form scabs. Then another ring of blisters would form around that and the process went on, creating ever-expanding itchy, scabby areas all over my body. I was also growing inexplicably fatigued.
Frantic for a cure from this nuisance which was hampering my busy life, I hurried to the chemist for the dapsone. It wasn’t in stock. I went home and began ringing chemists in the phone book but none of them stocked it. It was a very uncommon drug and had to be ordered in. Finally, on Easter Saturday, I went to the hospital chemist and they had it in stock. Luckily. This was just the first drama in what was to become a never ending series of crises as drugs either caused horrific reactions or just didn’t work, all while my life spiraled out of control.
Naturally I looked up Linear IGA on the internet. It is an autoimmune disease; only four in a million get it. It is hard to treat and lasts an average of around 5 years. None of this was good news, but I was determined to beat it. I would be one of the ones who recovered and resumed a normal life. Only it didn’t quite happen that way…
I learnt that determination did not work as a cure for an autoimmune disease and that optimism meant learning to accept that I had been limited, if not for life, then for a long time, and I had better accept it and make the most of the energy I did have.
Making things worse, no one had heard of this disease and I had many reactions such as “it’s just a rash, you need to get yourself motivated and have you tried a herbal remedy?” I learnt that getting motivated meant attempting to take on my old routines for a day or two, then being unable to get out of bed for days, or, worse, getting an infection and spending weeks in bed, taking multiple courses of antibiotics. An outing meant having to rest all day beforehand and afterwards. Herbal remedies cost and lot and did nothing. My old life soon disappeared and its circle of friends quickly shrunk.
Realising that I was not going to be able to continue with my work and studies, I applied to Centrelink for the disability pension. I was told I would not get it. The doctors agreed and said that it was just a matter of getting the disease under control, then reducing the drugs. I was given the impression that this would take a few months. It took nine years. After a few months both the doctors and Centrelink agreed to give me the pension.
The following years saw a procession of different drugs, all with a potential promise of a cure. Every time I would get up my hopes, especially when the big guns of chemotherapy and IVIG infusions were on offer. The chemo didn’t work, but the infusions did. After four years of fortnightly trips to the hospital. Who would have thought that what started out as four tiny “itchy bites” would change my life forever? I was 50.
Well-meaning but unhelpful comments make you realise people don’t understand the seriousness of the illness you are facing – as if you only try harder, you would beat this illness.
The Mighty website slogan is “We face disability, disease, and mental illness together”. Contributor, Allysha Snow, points out that, “we are all in this together. No one has to struggle alone”. (Unfortunately this post is no longer available).