Chronic Pain Is a Pain in the You Know What and Getting Help Is Complicated
I am in so much physical and emotional pain that I pretty much do not leave my house. I have been in physical pain most of my life. Sometimes I can cope easily (go for walks, shopping, and travel) but now none of these activities are possible. I am 50 years old and feel my body has given up on me. Some of my doctors try to be helpful and propose solutions to my pain. I have been diagnosed with fibromyalgia, postural orthostatic tachycardia syndrome, spondylosis, plantar fasciitis, mast cell activation syndrome, mental illness, and Ehlers-Danlos syndrome. I do not understand all of these diagnoses and how they are impacting my body. I just know I am suffering. Chronic pain is isolating and leaves you mentally despondent and desperate.
I have tried everything the doctors have recommended from physical therapy, dry needling, POTS protocol, exercise, medications, epidurals, therapy, radiofrequency ablation, and so much more. The most help I have received is from support groups. I attend six different support groups sponsored by U.S. Pain Foundation, National Alliance on Mental Illness, and Dysautonomia International. Some of them are for BIPOC (Black, Indigenous, and People of Color), LGBTQIA+, and local state/community groups. Discovering these groups has been a blessing. They have helped me not feel so alone, understand my illness better, access medical experts, understand what symptoms I am having, find a sense of community, and improve my mental health. Sometimes I cry at the meetings; just knowing that I am being heard, believed, and validated makes all the difference.
I see a therapist. She is not actually equipped to help me cope with my physical pain but she does her best to support me. She tried to refer me to someone else with expertise in chronic diseases, but my limitations with Medicare leave me with few options. So we work together to deal with my feelings and emotions around how my life is debilitated now. She recently asked me how I was coping and all I could say was that I was jealous. Jealous of all my friends, colleagues, people on TV, fellow grocery store shoppers, and the neighbor out for a walk. Why can’t I be like them? Why can’t I go for a walk or pick up my own groceries? I hate being jealous; it is not their fault. I then realized while talking about my jealousy that really, I was angry. I was angry at God and all the powers that be. I am angry about my body. Angry that this is how society mistreats disabled people. Angry that capitalism requires you to be thin, able-bodied, and so-called productive. Angry there is no room for me in this society. This realization brings me much pain, and also relief. Now I can work on this aspect of my illness and work toward healing.
My therapist and I recently talked about how I was not allowed to be sick as a child. My mother did not have time for sick children, so she often gave me an aspirin and sent me off to school. I learned to hide my illness and cope without support. I shared with my therapist that I contend with a voice in my head that berates me for being sick. It says, “You are malingering. You need to push through. You are just telling stories to get attention.” These are such harsh messages when I am barely hanging on and need all the support I can get. These messages have led to me not asking for the support and help I need. Instead, I suffer in silence or turn to doctors when my illness has already progressed.
On top of all this, I am a fat Black woman. As you may guess these intersections lead to discrimination from doctors. Every time I went to the doctor for anything, all they wanted to do was invalidate my pain, make sure I was not drug-seeking, and bully me into losing weight. This led me to avoid doctors and other medical professionals. The treatment I received was unethical, life-threatening, and cruel. This led to me going undiagnosed and suffering in pain for decades. After a considerable amount of effort and abuse, I finally have assembled a care team that is working in my best interest. Sometimes their need to discuss my weight comes up, but for the most part, they are focused on my illness and helping end the suffering. I know everyone is not as fortunate to finally have a positive care team and even a diagnosis, but I encourage you to not give up.
Pain leaves us disabled and without the wherewithal to fight with the doctors and the medical establishment or negotiate with family and friends who invalidate our pain. We are stuck negotiating with insurance companies for life-saving drugs as if they know what is best for us. We lose our jobs and become dependent on possibly abusive loved ones, or at worst end up unhoused or abused. We get accused of being anxious or malingering because we are being gaslit by our doctors. We never saw ourselves in this situation and we may have even judged others before we fell ill. We hold off as long as we can before we use mobility aids because we fear being judged, berated, or teased. We are more prone to abuse and violence.
I am here to tell you that you deserve to be supported, treated with dignity, receive state-of-the-art care, given respect, listened to, validated, believed, free from violence, and loved. Take care and ask for, and keep asking for the help and support you need. You deserve it.
I wish you well on your journey toward healing!
I am Black, lesbian, disabled, mentally ill, fat, a birth mom, mom and grandmom (grand ma Coco to be exact) and Funny. I am a woman who is constantly fighting for my and your liberation.
I have a history of working for those living at the margins mostly in activist and nonprofit spaces. I currently work in the mental health field serving those who have been convicted of felonies and are in mental heath court. I am also a writer. I write about disabilities, chronic illness, mental health, racial trauma, sexual violence and disordered eating. I am also a public community speaker on the same topics. Hit me up if you need my writing or speaking skills.
Please use she or her pronouns when referring to or about me.
