Rheumatoid arthritis has taken much from me over the last few years. As my disease has taken hold and progressed, there are changes I’ve had to make. Adjustments I’ve needed. Choices taken away from me.
The first was selling the little car I loved and buying a bigger car, an SUV. Because it was higher off the ground it was far easier to get in and out of. And had far better visibility, again because of the higher ride. I also needed to drive an automatic car, rather than my beloved manual transmission, because I couldn’t use and co-ordinate the clutch and brake and steering on a bad day.
It was a very hard thing to accept.
Then there was getting a walking stick. Needing it for balance, more than anything else. The stick itself is useless for support. My RA affects my whole body, so a walking stick is only useful if I were to have a day where only one leg is affected. That just doesn’t happen. But the walking stick does help with balance. And it does make people clear out of my way when I’m feeling unsteady and may fall.
I have fallen before. People are usually horrified. I lose balance and down I go. Usually no one helps. Because I’m 45 (and people say I look younger) if I fall down suddenly, I must be drunk or on drugs, so people stare and then scatter.
After that I got a pair of elbow crutches. Those are better, far more functional. If my upper body is not too bad, and my lower body is not playing nice, I can use those to help me walk. Take some of the weight off my knees and hips and feet with the crutches. And I won’t fall when I have those. I can lean on both of them for balance, until the dizzy storm passes.
Selling my little car, getting a walking stick and elbow crutches—adjustments I’ve made because of rheumatoid arthritis. The next is probably some sort of mobility scooter. There are days when I could definitely use one. Most days I am housebound. Couch bound. My GP has suggested to me that if I had a scooter, at least I could get out of the house. Get some air, get some sun. Being trapped within four walls day after day, week after week, month after month is pretty depressing. But I’m not there yet with a scooter. I’m able to get out. Drive my car. Not long distances, but I can get around my suburb. Make it to the shops.
Rheumatoid arthritis, however, has not only forced me to make adjustments in my daily life due to my mobility issues. It has also taken away so much that has dearly mattered to me, starting with my marriage.
My husband and I had been together for 14 years when I got really sick. Things had settled into that comfortable predictability of long term relationships. But we still loved each other. We were still happy, I thought.
We used to do everything together. We enjoyed all the same things. I was most definitely the ‘caretaker’ in the relationship, but when I became ill I changed. I didn’t mean to change, but I necessarily became a different person. I could no longer do the things we used to do together. I had to focus on myself more. I had to take care of myself more. I had to rest more. I had to do less for him.
And he didn’t step up. Instead of wanting to help me, ease my pain, support me, he pulled away. He refused to come to my medical appointments. He didn’t believe my diagnosis. He didn’t even so much as google ‘rheumatoid arthritis’ or ‘lupus’.
He didn’t believe me. It felt like a bigger betrayal than infidelity. The day he told me my illness was MY problem, not his, I knew our marriage was over.
Giving up work was also massive milestone. I went into a deep depression when I lost my job (the small business I worked for closed down) and six months later, after many interviews, and having provided much free work (I’m a web developer) I realised that no one was going to employ me. Why employ me, when there is an able bodied person who can do what I do? I’m good at what I do, but so are lots of healthy people. I have no special niche, or specific talent. No one talent that only I can do. And I realised also, why would they pay me, when I continue to provide free work for them? They take the work and promise next time there’s a problem with the site or they need a new feature, they’ll call me.
But they don’t.
So I stopped chasing the work. I still apply for jobs from time to time. I have now been out of the workforce for three years. My skills are out of date. I am 45. Even without my disability, that’s not a good position to start from. ‘Design’ is considered a young person’s realm. Just another bias to deal with.
And now the final insult. I will have to sell my house.
When my husband and I separated, I bought this house. I walked in, and fell in love. My kids love this house. It’s perfect for us. Except I can no longer care for it. I can’t do the housework. I can’t keep up with the large garden. And I can’t afford to pay others to do it for me.
Disability services will provide 1.5 hours per fortnight of domestic help. 1.5 hours a fortnight! That’s an insult.
I am on my own, with two kids. And now I have to wrench them from their home, because I am not well enough to manage this house anymore.
I have told them that the only way we can stay here is if they start helping. If they do more work around the house. They are trying. We shall see.
I don’t want to leave my home. But I know if I keep going on the same track I am on now, I have no choice. I need a smaller house. With a small courtyard. Some outdoor space for my dog and cat. They are my family too, and I will not lose them too.
But this house is a huge loss. One more thing that RA will take from me. My health, my marriage, my career, and now my home. That doesn’t leave much.
Truly understanding a disease or disability is not about looking at the symptom list, or the medications, or even the physical effects on the body. Truly understanding a disease is looking at the loss that comes with being disabled, and recognising that loss. Acknowledging that loss. And all the things the disease has taken away. That’s what disease and disability mean – loss.
So now I have a twelve month plan. Slowly getting this house sale ready. And looking for a more disability friendly house and area to move to. And hoping for a miracle. Just a ten percent improvement. Just a few hours of function per day. So that maybe, maybe I can stay.