Living with Invisible illness – Am I disabled?

Am I disabled?  This was a question I wrestled with for a long time. Years ago, my rheumatoid arthritis was severe, and the only medication that helped was prednisone.  It didn’t get me anywhere near remission, however and I took opioids to help manage the pain.  I lived a very impaired life.

But was I disabled?

I didn’t know.  Hindsight being what it is, I’d now say if you’re not sure, that’s totally OK, and don’t stress about it.  It really doesn’t matter how you  identify, one way or the other.  We all self-identify in many ways, and disability (or not) is just one part of our identity.

There is absolutely NO pressure either way. Or there shouldn’t be.  I think I put all that pressure on myself, for reasons I don’t fully understand.   I have some ideas though.

When I DID identify as disabled, I received a lot of backlash from my friends and family.  Namely my sister and pseudo-sister.  They were quite sure that I was NOT disabled, that I was just exaggerating my disease and cosplaying “disabled” for attention.

Nice, huh?  Especially after I’d agonised over this question mostly for exactly this reason. IF I identify as disabled and wear that identity proudly, how much flack will I get for it from these exact people?

Eventually, I stopped caring. About what they thought, and because they were nasty asshats, I stopped caring about THEM.  Full stop. 

At the point that I decided I was disabled, I was so very obviously disabled, that it didn’t matter what anyone else thought.

I have a rare bone disease, something similar to Osteopetrosis but I don’t fit into any of the existing categories. It has caused my spine to deteriorate much sooner than a normal person at my age.  I have severe spondylosis (osteoarthritis of the spine).  I have spinal canal stenosis, and forminal stenosis that compresses nerves in my spine and causes pain that is often very severe.  I have spondylolisthesis, meaning my L3 vertibrae was sitting forward and over the top of L4, and compressing more nerves.  All of this caused excruciating pain, and loss of strength and motor function.

Excruciating is NOT an exaggeration. “Excruciating” is exactly the right word, and I get very pissed when people have, for example, an “excruciating” paper-cut.  No. Just NO. 

Sigh. I’m about to go off on a tangent.   Someone actually told me their paper-cut was excruciating once, and I cringed.

Papercuts are never excruciating.  A knife in your back 24/7 that is being constantly twisted is excruciating.  Constant electric shocks down both legs, from hip to toes, is excruciating. Trying to walk when one leg is paralysed and has no motor strength and little motor control is excruciating. 

Please think carefully before you use that word.  Don’t water down its meaning.  Its there to describe truly agonising pain. I’m talking 9s and 10s on the pain scale. 

Not a papercut.

But I digress.  Back to the topic at hand. 

At the point that I decided I was disabled, I was living a very impaired life, due mostly to the above spinal condition.  I was housebound.  I couldn’t drive a car safely anymore most days.  I couldn’t walk to the bathroom unassisted.  I struggled to wipe my own butt.

The pain was not only excruciating, it was disabling in its own right.  My rheumatoid arthritis was also disabling, both affecting my mobility and range of motion via the deterioration of my joints, and the pain in itself was disabling. 

And still, I had to ask myself if I was disabled.

I had hearing loss in my left ear and required a hearing aid, I had low vision in my left eye that classed me as legally blind in that eye. I had only 10% function, as measured by my physiotherapist, in my left hand due to nerve damage. I struggled with basic tasks and still I had to ask myself if I was truly disabled.

I know, I’m a slow learner. 

So I asked myself:

Can I work a fulltime job?

Answer?  Nope.  Not even close. Even if I DID make it through one full day in the office, I would be totally wrecked by pain and fatigue at the end of the day. I wouldn’t have been functional through the whole day, because I only have around four upright hours to devote to the job.  (People don’t tend to like it when you spend half your work day asleep under the desk). And then I would need to spend the next two to three days recovering.

Back in 2016 I tried to study photography at a tertiary institution. The hours were part time, but there was one day that meant a morning class, AND an afternoon class that same day. It was unavoidable the way the classes were time tabled.  After that day I collapsed.  I continued to try and attend. My life became nothing but school and collapse.  I wasn’t there for my kids.  I wasn’t taking care of the house. I was driving to school, then cabbing to school cos I couldn’t drive, and then finally, after three weeks, I had to quit.

Withdrawing from the course was devastating to me.  I wanted it very badly.  I believed I could achieve it. I had the most positive attitude in the world.

But I was physically unable to keep up with the classes.  And it was because ONE day of the schedule required a full days attendance.  That was a bridge too far.

Yes, I could have dropped to a more part time load.  There were many reasons why I chose not to do that, and its not the point.

The point is, I was physically too disabled to hold down a job way back THEN.  But I was kidding myself.  THAT was the point where I should have accepted myself as disabled, and identified as disabled.

But it took longer. I wasn’t ready to accept my disability. My reality.

So can I hold down a full time job?

A whole big basketful of NOPE!

Verdict?  You’re disabled.

Next question: 

Can I drive a car?

Answer:  Some days. 

Elaborate…can you drive to the coast (a two hour drive)

Answer:  Fuck no!  Not at all. NO way, no how.  I can drive to the shops, which are two minute away, on some days. ON my best days.  Maybe twice a week I am well enough to drive to the shops, which are two minutes away. When I have medical appointments I most often get a ride or an uber…no, there is no way I could drive for two hours straight. I’m not sure I could do that as a passenger, nevermind driving.

Verdict?  You’re disabled.

Can I go out and do a 3km hike today if I feel like it?

Abso-fucking-lutely NOT!  There is NO way.  Even if a fire-breathing dragon were behind me, and I just needed to walk 3kms to escape, I’d get singed all nice and crispy and be KFC for that dragon.  I cannot CHOOSE to walk 3km.  Maybe with months of training and physiotherapy and….No. Just NO.  I can’t do it. I’ll probably never be able to do it. A world of “no”.

Verdict?  You’re disabled.

If a friend were to ring you right now and say “meet you in ten minutes for a coffee!” at the coffee shop two minutes up the road, could you do it?

Answer:  No.  I need to plan and prepare to go out for coffee. I need to do nothing before, so I have a full backpack of energy for the coffee date, and I have to clear the afternoon to recover.  I need more than ten minutes to get ready to go out, even if I AM well enough to go out that day. Most days I can’t go out for coffee even with all the assistive devices and best laid plans in the world.  That’s kinda what “housebound” means. 

Verdict?  You’re disabled.

If a friend asked you out for dinner tonight, or even next week, could you go?

Answer: No. I haven’t been out to dinner in over a decade. I haven’t been out after dark in over a decade. I am exhausted by 4pm most days. I am DONE. There is no way I could go out to dinner, sit upright, eat a meal, make conversation, stay AWAKE, at like, 7pm. Or 6pm. Or 5pm. And no one eats dinner at 5pm! Truth is, I can’t even do the “eating” part, let alone the “sitting on a chair and making conversation” part. I mostly live on fruit and veg puress, with some lean protein. Complicated restaurant dishes would likely containt too many allergens for me to eat. But even if I tried to go just for the social interaction, I’d be a brain-dead zombie and I’m sure the invitation wouldn’t be extended again.

Verdict? You’re disabled!

Can I make it to the bathroom on my own, unassisted?

Er, no. I need mobility devices, usually a walker, to even get to the bathroom. And I do mean MY bathroom, the one that’s about 20 feet away.

Verdict?  You’re disabled.

Elaborate…can you toilet yourself? Can you wipe your own butt?

Yes!  I still can!  I need a reacher sometimes, assistive devices, but I CAN do this. 

Can you shower unassisted?

Yes, with a shower chair and a hand-held shower.  Yes, yes, yes.

Verdict?  You’re still disabled, even though its good you can handle basic personal hygiene. If we took your assistive devices away you’d be sitting in your own muck.

Overall verdict? You’re disabled.

One final thing I thought about was my best friend (at the time). She too was a single mother, and she had three kids.  She worked full time and spent most evenings driving her kids around.  One Saturday, she came over to my place for a 4pm glass of wine.  She described her day.  Get up in the morning, drive kid1 to sport, come back drive kid2 to friend.  Go shop for groceries.  Home to unpack groceries and clean house.  Pick up kid2 and drop kid3 at a mates.  Come to my house for wine.  She was taking her “hour of rest” before she went home to cook dinner, feed the kids and drop two of them to different parties.  She would sit up and pick one of those kids at around 1am.  The other was sleeping over.

I reflected on ALL of that in one day. She was tired, sure. But she COULD do that. And she did it regularly.  That’s what a normal person is capable of.  Lots of things in one day.

I can only do ONE thing in a day.  And usually, that’s a medical appointment.  Maybe its grocery shopping.  But I can’t do both in one day.  Or I can’t do an appointment AND THEN go to gym.  My mind was blown by her being able to do all the things, the morning things, the afternoon things, the evening things, the night things and even the wee, small hours of the morning things…all in one day.

There is no way that I could do even half of what she did most days.

Verdict? I am most definitely disabled.  No question.  And my disability is significant. 

No matter what anyone thinks. No matter how invisible it is to the rest of the world.  No matter what names people call me, I identify as disabled, and I’m not proud nor ashamed, it is just one part of my identity.  Its not going to change, it is permanent.  But it does not define me.  I am also a musician, an artist, a writer, a mother, a friend, a business owner.  I am many things as well as disabled.

Let me be CLEAR. This is NOT how I think YOU should decide if you’re disabled or not. This is just the thought process I know I went through.  There are people who can do ALL of the above things, who are still DISABLED.  I am not proposing this is how to define disability, its just how I personally worked through the question.

There was a very long time when I felt that I wasn’t “disabled enough”.  Some disability advocates made me feel like I wasn’t entitled to identify as disabled, because my disability is invisible.  I’m not sure how much of that was my internal ableism, and fear of disability, and how much was a genuine model of disability that I was made to feel like I didn’t fit, a community I would not be allowed to share in. 

In part, because I wasn’t born with disabity, I acquired my disabilities in my 30s, I was a fully formed adult with fully formed views on a great many things.

BUT I HAD NEVER GIVEN DISABILITY MUCH THOUGHT.

I’m ashamed to admit that now, disability and living with disability never crossed my mind. So when I became sick, and then disabled I had a LOT of unpacking to do. I had a lot to learn, and I learned a lot from disability activists like Stella Young and Carly Findlay. Many of these ideas were very confronting for me. My sense of self, my politics, my place in the world were all challenged and all had to evolve. That kind of personal growth takes time. Well, it took time for me.

I know that having an invisible disability is very, very different to having a visible disability. Each are difficult in their own ways.  But that’s another blog post. 

Point is, disability is diverse.  It is not one thing, there is no strict definition that can or must be applied.  There are no gatekeepers, and its OK to be proud of your life lived with disability. 

It’s also ok to have those days where you wish your disability could be cured…sometimes I fall afoul of disability pride activism for feeling this way.  The social model of disability says that disability is not a defect that must be cured in order for a person to have a wonderful life.  And I agree with that. 

But my disability causes severe, constant pain.  A cure would mean an end to that pain. No one wants to live in constant pain, so wanting my disability cured is not an insult and should not be an affront to other disabled people. It’s a personal desire to live a pain free life.  Most people DO live a pain free life, and they wouldn’t deny another person pain relief.  But this is also a much bigger topic for another blog post. 

And also important to note, this is about my identity.  Qualifying for disability support pension, or other benefits, or for NDIS requires clear definition of disability and capability.  Again, an entirely different topic, for another blog post.

In the meantime, I identify as disabled, and I am very much at peace with it.  And everyone in my life needs to be too.