Medical frustrations

I went to the rheumatologist on Wednesday and was very frustrated. I wanted to write a blog, but Wednesday was when I could finally apply for Australian citizenship, so I was busy with submitting that form and I didn't want to ruin my happiness at getting it submitted.

This time, I was determined to talk to my rheumatologist about what the heck is wrong with me and my concerns about the possibility of having EDS. I know I have hypermobility and I relate to many of the things that I've read about it online. She doesn't think that I have EDS, as it's generally genetic and no one in my family has it, but she does think that some of my pain is due to hypermobility.

She also talked about my bloodwork. Every time she makes sure that I wasn't sick when I got it taken. It's always the same answer. No. I know that I can't get it taken when I'm sick because my inflammatory markers will be higher, which isn't indicative of my normal levels. But she said that my bloodwork has not gotten better with any of my medications. If anything, it has gotten worse over time.

It's exactly as it sounds. My medications may NOT be doing ANYTHING! So I've been spending hundreds, if not thousands, of dollars over the last few years, not to mention the side effects and impacts of taking the medications and having regular blood tests.

The next step is for me to have another x-ray, as it's been two years since my last one, to see if I finally qualify for biologics this time. Fingers crossed and prayers that I do! Biologics would mean that I am able to stop taking my other rheumatology medications and they are pregnancy-safe, which is good for when we do want to try for children.

If I don't qualify, we aren't sure where we'll go from there. While it's possible to get biologics without qualifying, they would cost about $10,000 a year, which just isn't feasible. Especially when I am so young, so, hopefully, have a lot more years to live! Plus she said there's about a 30% chance that they won't work. There are now other ways to qualify, but, unfortunately, or maybe fortunately, I don't qualify any of the other few options for a secondary qualification. Those include things like psoriasis or IBS.

So, for the time being anyway, I'm stuck taking medications that may or may not do anything, may have long-term impacts on my health, cost a lot of money, have blood tests, and still be in pain! She wants me to stay on my current medications until we know if I'll finally qualify for biologics. Then we'll decide if they are going to change or what we will do. I'll be going back in February, so, hopefully, I'll have some good news then, but I'm not holding my breath!

How do you define a disability?

Defining a disability is something that I have been struggling with for the last few years as my health deteriorates. A few years ago, I definitely wouldn't have said I have a disability, but it has become more of a question over a years. Should I write on forms, such as job applications, that I have a disability? I don't get any sort of government support and I'm able to do most things, but I am often in a debilitating amount of pain and I do have to go to doctor appointments and specialist appointments much more than the average person. But the stigma against disabilities has often caused me to refrain from stating that I do have a disability. While it is illegal to discriminate based on a disability, that doesn't mean that it doesn't happen through people's internal bias.

Having an invisible disability and being able to "pass" is both a blessing and a curse, although mostly a curse. I am able to hide it to reduce some discrimination, but it also means that there is a lack of understanding and compassion from the general public and those that aren't really close to you. People don't see my disability or my pain and, therefore, have a hard time grasping it. 

I look like a healthy 20-something-year-old woman. I can see, I can hear, I have all my limbs, and I'm not wheelchair bound. They don't realise the amount of pain I deal with on a daily basis. The amount of pain I deal with on a reasonably good day is probably more than what most people would take as a sick day. But I don't have the luxury to take sick days due to my pain. If I tried to take even just the really bad days off, I wouldn't be able to keep a job because I wouldn't have enough sick days and I'd be taking too many days without pay. I have to keep those sick days for visits to the doctor or times I get a cold or flu, which are plentiful thanks to being on immunosuppressants! 

Last year my pain got so bad, that there were days that I literally just cried while at work because it was unbearable. Pain medication didn't work. I had a heat blanket, but that only helped so much. There were times that I had the conversation with my husband that I thought I would even want to go to the extreme of paralysis from the lower back down if it would stop my pain. The only thing stopping me from going to the ED during those flares was knowing there was nothing they could do to stop the pain. But most people don't see that and, therefore, they can't understand it, even if they wanted to.

This is my favourite pain scale. On my worst days, it gets somewhere between an 8 and 9.  It also has the reference for people that childbirth without drugs is an 8, so my pain often gets worse than childbirth. On a really good day, my pain is a 3, but most good days are a 4.

While those with invisible disabilities may be able to "pass" and don't always get overt discrimination, we deal with discrimination on a different level. I say that I'm sore and tired, but people will respond that "everyone is sore and tired." "You're too young to be sick." "You're too young to take that many medications." But disabilities don't discriminate. Sure, some are more common with older age, but different disabilities can happen at any time. I currently take four different medications just for my autoimmune disease, and that's not counting my medications for mental health issues or my vitamins, one of which is needed to be taken alongside one of my autoimmune medications. Two of those four medications are immunosuppressants and one is actually a medication used in chemotherapy. Yup, that's right. I take two pills of chemotherapy every week, yet people think it "can't be that bad." I just need to exercise more and eat healthier. But would you say that to someone who had cancer or was in a wheelchair? Probably not, but if people can't see it, they have trouble believing it.

But this post isn't a pity party. I'm not writing it to get sympathy or to complain about my struggles and pain. But I want to spread awareness. There are different types of disabilities. Some are all of the time, some have flare-ups, and some have a roller coaster of unpredictable ups and downs. Mine tends to be seasonal, as I'm barely able to do anything without crippling pain but summers I almost feel like a normal person, although with pain like I'm a couple decades older, rather than in my 90s. But summer also means that I am often able to push my limits a bit more and that means a longer recovery time. It also means not knowing where my boundaries will be on any given day or time and needing to live with the consequences of it I try to push myself. But I hope that through this post, I can continue to spread awareness, especially for the International Day of People with Disability, so that people can understand different types of disability and have more compassion for those with a disability, even if that disability isn't visible.

Here's a link to my Pinterest board that shows some more examples of the struggles a person with an invisible disability faces.