I was sitting in my doctor’s office. One of four appoints I had that week, which is just one more than my average week. I was waiting to see my pain specialist and thinking how ironic it is that a pain specialist would have such uncomfortable chairs, but I assumed it was probably some type of litmus test to see who finds them unbearable. I certainly do. I have both autoimmune and degenerative arthritis and life can get complicated when you add in the dying bones in my knees. And painful. Life is very painful.
When you have an autoimmune disease you feel largely separate from the rest of the world. Our diseases can be invisible, our pain masked, our desire to be “normal” can overshadow our need to communicate our limitations. We can have strings of good days, or weeks, or even months, only to have it all come crashing down, with little to no warning. We have unusual disabilities that may not be visible.
This all means we live in a world that isn’t equipped to meet our unique needs. Most disability and handicap modifications required by businesses are usually designed specifically for wheelchairs or the blind. Sometimes that means the handicapped parking spaces can be too far for some people to walk, or the needs they have to see a movie can’t or won’t be accommodate. It means we survive in a world that doesn’t understand us, and that often judges us for not meeting what their vision of what disability is.
This means that we tend to be isolated. We tend to feel alone. We are made to feel small and unimportant as people accuse us of making it up or trying for sympathy. It means that even our families, friends, and sometimes even our spouses, abandon us for easier relationships that require less accommodation and patience.
This can also all lead up to feelings of self doubt. When you live in a world where even doctors tell you you are lying, it’s hard to not feel like you might just be insane and making it up. It means we feel guilty for ruining the good time when we can’t keep up. It often means we rarely have any validation or recognition for the daily struggles we face just trying to have a normal and independent life, even if we aren’t totally able to achieve that.
So, I was sitting in my doctor’s office, pondering what he will say about the fact that I had seemed to be improving but now feel like I’m sliding backwards. Will he say I didn’t try hard enough in physical therapy? Will I be chastised for not taking enough muscle relaxers for the pain? Or too many when I had to take them everyday for a week? It can feel like going to the principal’s office. It can feel like you are in trouble because you stopped improving.
But my pain specialist, and all my specialists for that matter, work well as a team and understand my obstacles. They communicate with each other to treat me as a whole person, in conjunction with each other. And my pain specialist walked into the room knowing I had started having flares again and that they had placed me back on low dose chemo. He knew that my PT had really been pushing me, but that she also felt like we had achieved a lot of little victories. I am able to walk backwards now. And side to side. And my steps are getting wider and into a more normal stride when I do. He came in not ready to yell, scold, or diminish those little steps that took 8 weeks to achieve.
Instead he did something that I wasn’t prepared for. Instead, when I explained my increased pain, he offered to listen. And I told him about my stress, and my bad dreams causing me to wake up in more pain, and my exhaustion. And he told me he thought we needed more tests, and that they require spinal injections to do. And I said ok, not knowing what else we could do but to keep trying.
He paused and looked at me thoughtfully. And then he spoke, and my whole world felt like it was breaking under his truth. He told me:
I am really impressed by you. I’m really proud that you are doing the specialized physical therapy and I can tell you are doing it at home. And I’m glad you are seeing the pain psychologist, and really trying to do all these things that everyone is saying will help. I know it’s hard. I know living life like this is hard, and I know that all of this stuff takes so much time that it’s easy to feel discouraged and you keep trying. You are being patient with the process. There are no quick fixes for this, and I wish there were. But I can tell you if you keep going, it may not seem like it, but it will help. And you’ll be able to look back and see that progress. You have so much coming at you from so many directions and that is hard. We can slow down our treatments and appointments if you want or need to. It can be overwhelming to be trying to do all this all the time and it would be understandable if you were overwhelmed, it’s ok if you are. We can always slow down.
And in those 30 seconds, while he simply told me I am human, and it’s ok to be human, I felt like my defensive walls were falling apart. While I have many appointments, they are usually with the auxiliary members of my medical team. The recheck appointments with my main specialists are only once a month typically. This particular appointment had been two months out so he could see how well physical therapy was working. It felt like it had been six years since someone did something as simple as validating my humanity, not just me the patient.
When you live in a world that ignores you, and calls you a liar, and generally treats you as an inconvenience, validation doesn’t happen often. Heck. Acknowledgement doesn’t happen often. And he not only acknowledged me, he validated me as a person with a very real illness and with very real obstacles. Just because people can’t see them, doesn’t mean they aren’t there. And here is someone saying, “it’s ok, I see them too.”
It took everything in me not to cry like an idiot in front of him. I wiped a tear discretely and continued to listen to my instructions for the next procedure. And I wondered how heavily I had been carrying that burden, because I hadn’t even noticed the weight of it until he lifted it. Suddenly, I remembered that I am sick, I have dying bones, I have discs and vertebrae that are degenerating. I am a person. I have feelings. I am in pain. I am not dramatic or crazy. My disease waxes and wanes, my pain comes and goes, and it is not always predictable.
I am disabled, whether or not you can see why, I am. I have diseases and disorders that you can’t see. I can walk normally. I can get in and out of cars. But I can’t drive because I can’t push the pedals. I am housebound because I struggle to walk around without then spending two days in bed recovering. Hell, I’m in bed for about 19 out of 24 hours because it hurts to sit, or stand, or bend, or walk. You can’t see why, but the reasons are there under my skin.
My doctor was just doing his job. He manages my pain. He works to get me independent. And he understands that living life like I do is hard.
But in that moment he reminded me that it’s ok to be human, and that humans are fragile, even if we hate to admit it. And it’s ok if the rest of the world refuses to accept that some disabilities aren’t visible, because he does, and my medical team does, and they are on my side cheering for me.
He won’t realize that he is one of the reasons I don’t give up. My doctors are there rooting for me, and I will keep trying because of it. He probably says it to all his patients, but to me, he was speaking right to the spot that was about to falter and cause my resolve to crumble. He reinforced it simply by saying, “It’s ok, you don’t have to be perfect, you just have to try.” And suddenly, I wasn’t crumbling anymore.