It’s been two years since my family swept me under the rug once my mental and physical health bubble bursted.
I often leave doctor appointments or patient events slightly depressed because each and everyone of them talks about support and family. Living with chronic illness, those are crucial for disease management and emotional well being.
But not everyone has that.
Not all families are supportive or understanding. Self doubt can come from those nearest and dearest to us.
Not all families are bonded by death, blood or disease.
Some families have a black sheep. I might be that inked black sheep. I have always embraced my difference when others thought it was just a phase.
Not everyone is compassionate towards those with chronic or mental illness even when they see someone suffering from it first hand. We’re not always chipper when dealing with chronic illness either.
I learned one of my biggest mistakes in life is expecting anything from anyone; including family.
One of the hardest things I have done was accept I was not going to get the support from those I was supposed to call my family. Then to accept how that lack of support affected me over my life.
We don’t have the choice of impact we leave on our child, they do. We can only try our hardest to listen, understand, love and support them.
The guilt of needing help has been ingrained in my brain. Now I am chronically ill and I feel guilty for it, especially when I need help. I live with a debilitating disease that makes daily life a consistent struggle, and I feel guilty for it.
I realized one of my other biggest mistakes was letting others bring me down.
As I grew up I was often shamed for my emotional and physical problems, including when I was sick or injured needing medical attention. Whenever I was in need it would set my mother off, her favorite weapon was shame.
Some people don’t like doctors, however some people need their help regardless of someone else opinion on them.
I remember the comments from family members about my grandmother and aunt, who both suffered from arthritis. If I knew what I knew about arthritis now, I would have quickly defended them.
It’s important to stick up for your health and others. No one should suffer in silence and alone.
How do we first learn about arthritis? Our grandparents. We see it as part of aging when it is so much more. It’s not just your grandmother’s disease.
The stigma of arthritis has been around me my entire life, now I am living in it’s nightmare.
When I was diagnosed with my second form of arthritis in September 2016, it wasn’t only osteoarthritis, I was also introduced to what turned out to be growing calcium deposits on my thyroid another specialist and a surgeon. I was being thrown words like biopsy, cancerous, benign for the first time. I was terrified. I was in pain.
I burst. I had only just been living with my diagnosis of Rheumatoid Arthritis for over a year at this point, now thrown another arthritis diagnosis, my doctor telling me I could try these things but it may not work to relieve the pain. I was so sick and so out of it I couldn’t do the one thing I absolutely needed to do; be a mom for a number of weeks. I was angry over losing control of my life and I was desperate for relief. Pain can make people pretty desperate. Pain can also make people snappy and angry.
Arthritis vs Cancer
I remember family members coming over to look at my xray and ultrasound papers the day I received my osteoarthritis diagnosis and introduction to the lumps. Cancer runs in this family, there are a few survivors so they thought they could give me some answers. Arthritis also runs in my family, I am however the only one living with autoimmune arthritis. My aunt who struggled with diabetes and RA whom was wheelchair bound as long as I could remember passed away the same week I was diagnosed with RA. I remember them looking over my papers. You’ll be Fine. All I ever heard from those I begged for support was I’ll be fine, how everyone has pain, they have their own lives to carry on with.
I haven’t heard from them since.
I guess my disease isn’t severe enough for their help, support or even compassion.
I spoke up about the treatment from my mother to some friends on my facebook. One status. It took one status for them to drop me like a fly. I was struggling with my mental health, suicidal, I was struggling with side effects from just starting biologics and effexor. I had people posting horrible things about me because I had a gofundme to raise money to try to relieve some of the pain I was in and get healthier. Arthritis was in it’s full effects and tearing my life apart, me going through the pain and the emotions seemed to be an inconvenience for everyone else. I remember being upset because my mother would post about Donald Trump but not her daughter’s gofundme and the only help she physically gave me was placing crystals around my apartment. I remember my friends asking me where my family was, that’s when they finally popped in to help with that treatments they thought would be best for me and to make sure I tell my friends they chipped in.
It was never about how I was but how they would look.
I received a Christmas card and a cheque for $50. Inside the card explained how they decided to take my mother’s side, as she threatened she would turn them against me.
While I might be that black sheep of my family from before my life with Rheumatoid Arthritis I know that life doesn’t go as expected. It doesn’t always need to be bad. I can and do have family, it might be smaller and not what I see others have but the connection I have with my son is greater than any I have ever had. Maybe one day I will share that with someone and their family.