I think it’s safe to say, heading into the New Year, that we all have goals we plan to accomplish. I recommend letting the old things pass away and starting anew. Sure, we still will deal with doctor’s appointments and we still have ankylosing spondylitis (AS) or axial spondyloarthritis (AxSpA), but there are steps we can take to ensure that we have a successful year, both mentally and physically.
Whether you’re newly diagnosed or have been diagnosed for a while, joining support groups can help you to talk about your symptoms and what you are going through. No one understands quite like others who are going through the same thing. It helps so much to have people to talk to who understand and support you, even if it is just online groups. I have made some of the greatest friends in online communities for AS and chronic illnesses.
If you are not comfortable sharing your feelings with strangers, try journaling. There will come a time — numerous times, in fact — when you will need to express what you are going through. You will experience all of the stages of grief over the decline of your health and the life you once had, and needing to vent those emotions is extremely important for your journey with AS. This is a very important goal: to have communication. I learned the hard way, and overworked and overstressed my body thinking that I could still do things I used to do. I did not tell people I needed help, being too proud to admit that at 35, I couldn’t grocery shop without being in pain. The anger was eating me up. So was the fear of what was happening to me. I had to get help.
Our bodies can go through so many changes and we have tons of doctor’s appointments and try lots of different medicines to see which will work for us. After a while, this journey can start to become overwhelming. That is where I found writing down my symptoms to be the most helpful, not just for me, but also for my doctors. It felt like nothing was working for me until I finally got on the biologic Cimzia (certolizumab pegol) two years after my diagnosis. It has helped greatly with my mobility in the mornings, but I can still feel when I have done too much during the day. I still have to pace myself, I still get fatigued, and I am still working on finding that balance in my life. Not to mention that the TNF blocker weakens your immune system, so you have to be careful about not getting sick, too.
I have learned through this journey that it is best to have people you can talk to about AS. Some have very mild cases and it doesn’t affect them that badly, which is fantastic for them. Some don’t receive a diagnosis in time to stop the disease’s progression, as in my case, and we live with lots of pain and complications from it, which can cause anger. I have found that getting involved in the AS community and learning the tricks that work for some people help. That might work for you as well. It helps to keep the focus off of myself. I have also learned that I can’t change the past. I can’t help that it took six years to get a diagnosis, but I can help my attitude toward the situation. Having a negative attitude never got anyone anywhere, and it only made me sicker.
I encourage anyone with AS to start off this new year with a positive attitude and communicate your needs to those around you. This is a disease that not many people know about and not many doctors are diagnosing. We have to stick together, because we are stronger together.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.