If you aren’t making sure that you have the best healthcare team you can get, then I hope that after you’re done reading my article, you will start to reflect on your healthcare team in order to decide whether they are the right fit to look after the most precious thing you have, your health. I call it a healthcare team because they should all be working together to get you better. Many of us just stick with the doctor we were referred to or the physiotherapist that is just around the block, but when you have an autoimmune disease, it’s important that those that are taking care of you have your best interest at heart and know about your disease because without my health, there is no me.
If I can give any advice, it’s to make sure you have a good relationship with your rheumatologist/specialist. They are making decisions about your health and if you have Ankylosing Spondylitis, early intervention and proper disease management can be life changing. They are also the person that will have to go to bat for you if your disease ever becomes so unmanageable that you have to decrease your work hours, get work accommodations or if you can no longer work. Many of us don’t want to think about that but it happened to me at a young age and out of nowhere. So much of what happens with LTDI (Long Term Disability Insurance) or any disability claim through the government (ODSP, CPP) is based on your rheumatologist’s notes, letters they write for you and forms they fill out requested by your employer, the government, or your insurance provider. If you don’t have a good relationship, or if your doctor doesn’t have good communication skills, or if you don’t think your doctor will have your back, do some research and find a new one. You deserve the best care and every doctor isn’t as invested as you may need them to be. I will say, most of the doctors that I have encountered have been amazing. Talk to your doctor. Be human with them. They are human too and a human connection can be very powerful. Having someone who believed in me because they witnessed my entire decline themselves was empowering. My rheumatologist knew I was trying to live a “normal” life. I was young and didn’t want to accept what was happening to me. I would push myself to work more only to have to pull back again because of a flare or an infection. So after years of this back and forth battle, when I finally understood that my body just couldn’t handle more, she was there to tell the world for me.
Another really important member of my healthcare team is my physiotherapist. I’ve had several different physiotherapists and I just kept looking until I found the right fit for me. There were times when I stopped going to physio because I didn’t see the benefit. Now that I found the right one, she has become a valuable member of my team. She is there for pain management with acupuncture moving needles, the TENS machine or just to stretch out my body. Or, if I’m having a good day, she gets me working out. Having a physiotherapist that understands your disease is worth searching for. Don’t be afraid to ask them questions about what their plan would be for someone with your disease. You can interview them and assess whether they are the right fit for you.
A massage therapist is also key. When I’m stiff, it can be pretty bad. I tense my muscles and can sometimes just stay like that and not even realize it. When I get my massage, it’s always surprising how sore I actually am. I’ve also had several massage therapists and I finally found one who truly understands Ankylosing Spondylitis. He’s also an osteopath and is really passionate about localizing the pain and understanding why it’s there. Nothing is perfect and just as I prefer my dental hygienist not to talk to me while I have all kinds of dental tools in my mouth, I would also prefer that my massage therapist, where there’s literally a sheet between us, not speak either, but I seem to know about his entire life. Why are these people always the most chatty? 🙂
As a side note, your physiotherapist and your massage therapist write down notes about what you tell them. I didn’t know that until I requested my file. This is important only because I think many of us downplay how we are feeling when we get asked the general question “how are you?” My default answer to this question is “I’m ok”. It’s my go to. It’s my avoidance answer. Doesn’t everyone just say that? I say I’m ok but how I’m actually feeling is “I’m exhausted, I haven’t slept, I’m really stiff, I can’t walk today, I have neck pain, a stabbing pain in my spine and my ribs are on fire”. I often think it’s just a question that people ask to make small talk and my truthful answer to that question doesn’t really lead to small talk. Anyway, please learn from me and don’t ever say “I’m ok” to your medical health team unless you really are ok because it may come back to haunt you if you ever find yourself in the position that I did with an insurance company looking for any reason to prove that I’m not really as sick as I say I am. When speaking to your healthcare team, speak in specifics at all times.
Even though I see my rheumatologist way more than my family doctor, she still plays an important role on my healthcare team. My family doctor is there for me for all things other than my AS and PSC but she ends up having to treat many of the side effects from my meds. Since I’m immune compromised, I get sick often and she always makes time to see me. I copy her on all of my blood work (you can ask the lab to add a doctor to the results yourself) and I also make sure she’s copied on any imaging as well. The more in the loop your team is, the more they care about you and the easier it is for them to help you.
Family and friends are the final pieces of my healthcare team. They obviously don’t count as “medical” but they can have a huge impact on your health. I keep a small circle of friends because there’s not a lot of me to go around and I just don’t have the energy to invest into too many friendships. I also need friends that understand my unpredictability and that’s just not for everyone. I can’t handle negativity or stress from friendships since I have enough of that going on with my health, so I surround myself with people who uplift me, make me laugh or are just easy to be around. It’s important to reach out to friends and family and to let them in on your story. You would be surprised how many people don’t truly understand what you’re going through on a daily basis and there’s something cathartic about letting them in on your spoons.
Thanks for listening!
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