I have always had positive experiences with doctors, particularly for someone with a rare and complex condition. I have spinal muscular atrophy, I am a full-time wheelchair user and am on a portable ventilator via a tracheotomy. I know lots of people who have struggled to get doctors to listen to them or help them with a problem, but this has never been an issue for me – until yesterday.
For the past few months I have been getting a lot of pain in my knee. I haven’t injured it, so I thought it would just go away. When it didn’t, I tried over the counter pain medications and private physical therapy, but none of this helped. I asked my mom, who is a great doctor, what she thought and she said I should see my GP (general practitioner) to get a referral to a knee specialist. I thought this was a good idea as I didn’t just want stronger pain meds, I wanted a plan to treat what was causing the pain. So I made an appointment.
First I had a phone call from the physical therapist at the practice who asked me lots of questions, then told me he recommended something stronger for the pain and said I should be moving my knee every 15 minutes. Let’s pause there – this man knew I am a wheelchair user who can’t move my legs, and that I work in London where I am in my chair for 12 hours, so I don’t quite know how he thought this was going to be possible. When I told him that wasn’t going to work, he said I should see the GP to come up with a plan. So I made an appointment for later that day.
In the appointment I told the GP the pain was getting worse, and I thought I needed to see a specialist. He disagreed – he gave me something for pain and ordered an x-ray to see if there was “significant wear-and-tear or a stress fracture.” Let’s pause again. I have never been able to walk. so it seemed pretty obvious there wasn’t going to be wear-and-tear, and based on the pain, there is no way it is a stress fracture. He said there was no point in seeing a specialist, and really there was nothing to do but manage the pain.
I am 24 years old, so to be told that I am just going to have to live with this severe pain and be on strong medication for the rest of my life really upset me. If there were no other options, I would have to accept this, but to not even see a specialist seemed like giving up before we even started.
I work on a project where we look into other young people with life-limiting conditions feel about their lives, and how we are all trying to Live Life to the Fullest. This put what the doctor said in a new perspective for me. Before this project, I tried to ignore the fact that I have a shorter life-expectancy than most, and when I was diagnosed I wasn’t expected to live to 5 years old. Now I think about it, but in the most positive way possible. I value every day and I refuse to not live my life to the fullest.
I could not believe the GP was fine with letting me live in pain without exhausting all options. I came home and cried to my mom about how unfair it was that on top of everything else I deal with as a young disabled person, I’m just meant to accept this severe pain like I was a much older person who had years of wear-and-tear to explain it.
I am very lucky to have a mom who is a doctor and a family that can support me to see a specialist privately, but this is not an option available to everyone. There may be nothing that can be done for my knee, but I have to at
least try to fix it before I write it off.
At 24 I can’t just say “oh well” when it comes to life-long pain, not when I fight like hell in every way to make sure I am living the life I want for whatever time I have. When you have a life-limiting condition like I do, every day counts – that may sound cheesy, but it is true.
This piece was originally published on The Mighty on December 10, 2018.