How has being a woman shaped your AxSpa journey?
Women tend to experience the journey of living with AxSpa differently than men -- it often takes much longer for women to get a correct diagnosis and they tend to be under-treated after diagnosis.
We'd love to hear from the women in our community -- do you think being a woman impacted your experience getting an AxSpa diagnosis or treatment? On the other hand, how has AxSpa affected your life as a woman (e.g., relationships, pregnancy, intimacy, etc.)?
Hi!
thank you for suggesting this forum, I think this is a hot topic at the moment.
Actually, the charity NASS is starting a focus group for women with AxSpa and I have asked to join it. We will have very interesting discussions there for sure!
I have reported my experience of being a woman and living with AxSpa in an article for this site, after an annoying rheumatology consultation.
I think I still have a lot to reflect on about my diagnosis with AxSpa and my life as a woman. It certainly impacts my self confidence in relationships, and particularly within a romantic relationship. I think I get on with things and realise afterwards that it wasn't that easy for me. Also, I think there is not enough research being done on the feminine hormones, menstrual cycle, and inflammation. For instance, I have noticed that my symptoms are worse depending on the time of the month.
So we still have a lot to learn, a lot to discuss and more work to raise awareness about our cause.
Take care,
Julie.
Happy National Womens' Day AxSPA community!
I Am Woman
Suffering from full-body, multi-joint, severe pain, fatigue and enthesitis, has been extremely difficult - the most difficult thing I have had to cope with. Being a woman, I was systematically convinced for years into thinking I was making up this pain. I actually began to believe I was mentally ill, that it was possible the pain was all in my head. It took decades to get the correct diagnosis, after years of misdiagnosis.
My Anger
My pain and discomfort were dismissed because spondyloarthritis was thought to be a "man's disease" - and I continue to hear this from practitioners to this day. This body has suffered so much damage due arrogance and ego of those in the medical and scientific fields studying chronic inflammatory diseases. Inflammation has ravaged my body, now I live broken and chronically ill. I am angry. What a horrible disservice to the women of this world.
The Journey
In my teens, I suffered from anger/depression, allergies/asthma, IBS, TMJ, and headaches/migraines - I felt miserable.
In my 20s, my neck was fused bc of a burst disc. And an ankle injury ended my dance career. Continually told I was depressed and anxiety-ridden, I was pumped with all kinds of antidepressants/anxiolytics for years - living in a haze of confusion and anger. Consults with a rheumy, a few neurologists and neurosurgeons, physical therapists, and psych docs continued to convince me it was all in my head - that I needed to work on the trauma from childhood because I was carrying it in my body; mental trauma was the physical pain I felt.
In my 30s, my lower spine, pelvis, and hips became painful. I continued with PT, had multiple joint replacement surgeries (which have continued into my 50s), and was diagnosed with bipolar/major depression, continuing on with the brain-numbing meds.
In my late 30s, early 40s - full body pain and fatigue hit me. I couldn't work anymore - I was disabled by severe exhaustion. I couldn't think straight. Crashing was inevitable. I hit bottom.
Diagnosis
Desperate for diagnosis by my mid 40's, I sought out a new rheumatologist after moving to a new city. With full history and physical exam, labs revealing high inflammatory markers, he thoroughly evaluated me. A diagnosis of spondyloarthritis finally given - I felt vindicated. Relieved but devastated to learn I had this incurable, debilitating, and worsening condition, my healing journey has begun.hello,
What a journey it has been to you to finally get some answers.
Thank you for sharing all this. With my 7 years of wait to get a diagnosis, I feel I actually got an easy way out compared to you...
I am actually interested now in the healing process, and I am curious to find out how you are doing it? I am also working on that, this goes with my move to Edinburgh. I very much see things like that: in London, I suffered, I got diagnosed with AxSpa, I worked with doctors, therapists, other patients and charities to find treatments, therapies and learn self management approaches which would work for me to get better.
Now I have moved to Edinburgh with the idea to heal myself after the trauma caused physically and mentally to me by AxSpa. I am doing well, I am healing with nature, pets, fresh air, reconnecting with parts of myself which I thought were dead, gone and not reachable because of my diagnosis. I am also exploring spiritual practices like shamanic journeys, and I find it's working on my healing. I had healing sessions as well with a practitioner. I am connecting with people, with the land, with artistic practices like dancing, singing, moving, like I have never done before. I find it quite a powerful process, still ongoing. I am also reading a fair bit for my self healing. All this is good, it opens for me new perspectives about the future. I am not saying that AxSpa is gone, I still have symptoms, I still need medication, physiotherapy, hydrotherapy, stretches, etc. However I am healing myself, my body, my soul now I have the space and capacity to do it, because I can manage AxSpa. I came to Scotland for many reasons, all good, and one of them is healing myself. I am so glad I did that move.
Please tell me more about your healing process Rebecca, if you are happy to do so, as I feel very drawn to that topic (as you can see by the long post, sorry I got carried away!!).
Take care,
Julie.Julie Vallortigara - Suffering 7 years is WAY TOO long to wait for a diagnosis. There is no "easy way out" with this debilitating disease. As far as I am concerned waiting one month is way too long for a diagnosis when inflammatory arthritis is suspected. It's so damaging - on the body, mind, and soul.
I am still struggling to get this disease under control. My healing process currently is on hold. I continue with surgery due to damage done, finding the most effective medication that takes away the greatest amount of pain and fatigue, and learning to get on with life through the fatigue and exhaustion I continue to have. I am afraid I have no great plan when it comes to a healing process.
My healing process is stagnant and lacking - I struggle through relationships (casual & personal), daily life, and thoughts about my future. I've pretty much isolated myself and hide away a lot. I am afraid I have no great plan to heal myself. Your plan sounds much more productive and healthy. I just need to pick myself up off the ground so I can move forward.
I suppose if I had the energy (and money) I would run away to a beautiful place and learn to live off the land, take on new spiritual and healing ways, and connect artistically with others.
You give me hope. I am so very glad your move to Edinburgh has been positively healing. It sounds wonderful to connect on so many different levels. Thanks for sharing what has helped you move forward as you continue to fight inflammatory arthritis.
Warmly ~ Rebecca
