"You can’t be sick. Mind over matter, Lisa." - Words spoken by my mother many years ago one winter morning when I tried to tell her that I didn’t feel well. She was busy getting ready for work and had already started the car outside to get it warmed up.
"I… don’t… feel… so… good…" I say as the room turns black and I start to fall on the kitchen floor. My mom quickly believed that maybe I really was sick and didn’t just want to avoid going to school that day. All plans were immediately cancelled. Mind over matter was not going to cut it.
Years later when I was diagnosed with multiple sclerosis, my mother didn’t hesitate to believe that something was wrong. She was there for me and supported me through the process. There was no instruction to use "mind over matter." I’m very fortunate in that those around me do not doubt when I say that I don’t feel well.
But not everybody has family members who truly try to understand their disease and accept reports of their experience at face value. Unfortunately, my mother faced a lack of understanding, empathy and support from family members when she was diagnosed with lupus.
In looking back, my excuse is that I lived in a different state and didn’t witness her experiences first hand. I really should have been more engaged and at least ask more questions about how she was doing. I was busy working on my doctorate degree and took cues from my father as to how concerned I should be about my mom.
Unfortunately, my father didn’t believe that anything was wrong and he had me doubting it too. We’ve talked about denial when it comes to family members not understanding what is going on in our bodies. But we haven’t discussed what to do about it.
Not long ago, I received a message from a community member who is struggling with the lack of interest and understanding she needs from her family members. She is newly diagnosed and coming to terms with the fact that years of unexplained health problems now has a name. Multiple Sclerosis.
Here is an excerpt from her message:
"My family has totally turned their backs on me and my dx; they don’t believe me at all. When I told my mother, she never even told my father So when I told him, he just blew it off as something my mother “mentioned!” I have four brothers and four sisters, all of whom have offered NO support or even a recognition of this disease. I need them to know bc of my cognitive problems mainly; I cannot, at this point until I get treatment, commit to anything. The fatigue as well prevents me from committing to anything; I never know how I will feel. My husband’s family have been very kind, as usual, and they continue to track my progress."
I’m embarrassed when I think back to how frustrated my own mother must have been for years as she didn’t get the support she needed from family members. She dealt with the symptoms and treatments associated with lupus on her own. There were people in her life who even thought that she was "making herself sick" and simply found a doctor who would go along with it. Even now lupus is not a well-understood disease.
So what can we do, as people living with mysterious and misunderstood diseases, when family members do not give us the support and understanding we need? hat should we do to help educate those around us about the disease and how it affects us each specifically?
As March is MS Awareness Month, there have been many news articles featuring the stories of persons living with this disease. Read them and share them. The National MS Society offers many printed and downloadable brochures and booklets which offer clear explanations and discussions on a variety of topics.
In our community member’s situation, I would recommend sharing the following booklets with family members. Contact your local NMSS chapter for additional materials.
"But You Look So Good" (pdf)
Living with MS (pdf)
Although living with MS is not a typical "mind over matter" issue, I will openly suggest that having a positive mindset is tantamount to living well with this disease.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.