Otherwise Healthy

This post is shared as part of Blogging Against Disablism Day 2016. To learn more about this day and read other posts, visit the link.

My friend Lynda wrote a book entitled Otherwise Healthy after her diagnosis of breast cancer. The book is a resource and guide for those facing a health crisis. Although it is geared towards cancer, the chapters can apply to anyone who finds themselves living through chronic illness or disease, endless doctor visits, tests and treatments.

Lynda came up with the title after reading one of her medical reports which said (I’m paraphrasing), “This otherwise healthy woman comes to me after being diagnosed with breast cancer.” When I read this story in the book introduction, it struck me that I have never seen those words written about myself. I have never heard a doctor say I am “otherwise healthy.”

A part of me (the part that understands the medical model of disability which views disability as a deficit which must be cured) can understand why medical professionals do not consider me a healthy woman. I have lived with a progressive neuromuscular disease all of my life. I have used a wheelchair for 100% of my community mobility since 1994. I require the aid of Personal Assistants (PAs) to complete activities of daily living such as bathing, dressing, or using the toilet. Without assistance from my PAs, I would be unable to live independently and would require institutional care.

One of the reasons doctors may not view me as “otherwise healthy” is because I am an outlier when it comes to health and disability. According to the United States Centers for Disease Control and Prevention, disability is associated with health disparities. I took a look at the data for my home state (New York) and found I am not the average when it comes to health and disability. If you consider metrics of health such as blood pressure, cholesterol, weight and lifestyle choices, I am a very healthy woman compared to other disabled adults in New York. My blood pressure and cholesterol are within recommended ranges, unlike the 40 % of disabled adults in New York who report high blood pressure and the 43 % who have high cholesterol. I have lost almost ten pounds this year, bringing me back to a healthy weight, unlike 40% of disabled adults in New York who are obese. For the first time in almost twenty years I am exercising almost every day, something only 13% of my disabled peers claim. I have never smoked, unlike 30% of disabled adults in New York who smoke regularly. While I do enjoy wine I drink alcohol in moderation, unlike 15% of disabled adults in New York who report binge drinking (this is less than the 19% of nondisabled New Yorkers). I do not use any other drugs and do not take any prescription medications. Yes, I am a forty-two year old disabled woman who does not take any prescription medications. Whenever I see new doctors, they are always amazed by this. More importantly, I consider myself to be in good health, unlike 43% of disabled New Yorkers who consider their health to be fair or poor.

So if I consider myself to be in good health, why is it difficult for medical professionals to view me as “otherwise healthy?” I think it is because the doctors, who are still mostly nondisabled men, have difficulty seeing anything but my shiny red wheelchair. They do not view me as a complete person, a common complaint of many of my friends with various disabilities. Doctors see the disability first and think this is the one factor that must influence my health most significantly. They see the disabled woman – weak and contracted muscles, needing assistance, not curable, not fixable – instead of a woman with a full-time job, volunteer obligations and hobbies. Thus, somehow they jump to the conclusion my health must be poor because I have been living with disability my entire life.

When medical professionals wrongly assume I am unhealthy just because I am disabled, they often make other false assumptions about me. I have had doctors and nurses look at me with shock when they discover I have been sexually active. I know some of my family members read my blog and may not want to think about this – but medical professionals should not assume someone is celibate just because they have a disability. Several doctors looked at me askance when I asked about birth control options. Let’s not even talk about the many times I tried to raise the topic of having a tubal ligation, only to have multiple doctors flat out refuse to discuss it as an option.

If doctors viewed their disabled patients as having the potential for good health, the statistics on health and disability might change. If medical professionals looked at their disabled patients as complete people, not just a disease or disability, they would start treating the entire person instead of just the disease or disability. When I was hospitalized due to complications after my gallbladder surgery three years ago, doctors and nurses treated me differently after my sisters encouraged them to stop looking at my wheelchair and start seeing me. I am fortunate to have had advocates to speak on my behalf. I worry about those who do not have such support systems.

One way to help medical professionals view disabled patients as complete people is to introduce the social model of disability in medical training. The social model, which does not view disability as a medical condition or defect in need of a cure, seeks to change society to better meet the needs of the disabled. The social model recognizes my mobility impairment will not go away, does not need to go away for me to be a complete person. Rather, society needs to adapt to accommodate my needs so I can participate fully in my community. I do not know how to incorporate this model into western medical training which is built around helping doctors learn how to “fix patients.” Perhaps I’ll explore that next year for Blogging Against Disablism.

Until then, I hope someday my doctors will view me as “otherwise healthy.” That is how I view myself – and it is how I deserve to be seen.

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15 thoughts on “Otherwise Healthy

  1. Wow. This would make me crazy. You are quite capable of defining your own life. My brain is so confused. This must be able splaining. I think about my own struggles to be heard by my doctor, and how maddening it is when they are dismissive. Glad to hear that I have one friend who’s mastered the daily exercise thing and hope I can say the same soon. You obviously work hard at your health.

    Liked by 1 person

    • The dismissiveness is one reason so many people with disabilities dread new doctors. We have this history of needing to validate ourselves, our bodies and our choices. We become defensive easily – or at least I do!

      Liked by 1 person

      • This is true even with an “invisible” illness like mine. The number of times I’ve been told that it’s “all in my head.” Oh wait, it is! New doctors are hard to get used to, and when I get a great one, I’m so thrilled about it…and so sad when they move, as they so often seem to do.

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        • Yes – as soon as we get them trained something happens to disrupt the relationship. I have been fortunate to have long relationships with my neurologists, who are really key in my health.

          I could and probably should write several posts about hidden disabilities.

          Liked by 1 person

  2. I am so glad to hear you are “otherwise healthy”! You are engaging in the enjoyment of living, and the idea of a shiny red wheelchair makes me smile. Is it motorized? I’d be probably be jumping out of your way, because you have places to go and things to do. Thank you for sharing life from your point of view.

    I’m learning what you mean about new doctors. I have a new urologist–who is superb–but first his impression of me was formed by what was on my chart (which looks kind of bad and, well…dramatic). He’s now seen me bounce back from surgery and take things in stride. He gets that I am Sepsis Recovery Girl. In other words, I am “otherwise healthy.” 🙂

    Liked by 1 person

    • Thank you for your kind words. It is difficult for me to know how to respond when people call me an inspiration. I do appreciate your compliment, but I rarely feel like I am doing anything inspirational. I am grateful for your comments, and the intent with which they are made. I am humbled.

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  3. This post made me wonder… You haven’t allowed your disability to “disable you”. Is the attitude that healthcare professionals have towards disabled patients preventing or enabling others to not live as full an “otherwise healthy” lifestyle as they could. This post is really making me think. I have a lot of compassion for you and admire your matter of fact, don’t let it get me down attitude. Hmm…. I feel this is going to be something I ponder throughout the week.
    Thought provoking writing is my favourite kind to read, whether it be fictional, educational or expositional, it has to be thought provoking to keep me interested. This has done that indeed! Thank you for sharing!

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    • Thank you for the compliment and for sharing your thoughts. There is research to support the claim that people with severe disabilities receive less adequate pain medication. I can’t count the number of times I have heard, “I’d kill myself if I had to live with a serious disability.” I know people fear disability, but perhaps if there were appropriate supports for community living, the fear would be less. I tell my story to help others learn disability is not a fear worse than death. It is possible to be “otherwise healthy.” Even if professionals don’t help you as they should.

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  4. I love everything about this post. I am so frustrated when see people being (or am myself) dismissed or disregarded. I know it’s a difficult part of training and acculturation for some medical and service professionals to overcome, but we’re all just people here, not diseases or disorders or the tools we use. My aunt, who was rendered a quadriplegic by polio, nonetheless retained a brilliant mind that was curious and absorptive and far-ranging in her reading and viewing. It was so mad-I-could-spit rage-inducing to hear stories about how she would often be ignored when she spoke up for herself and her own care, at time leading to serious injury for her, by people who simply couldn’t hear past the wheelchair, who presumed they knew better. (She never told those stories; her daughter did. Her own sweet spirit was probably praying for those who had harmed or slighted her.) As always, you remind me to check myself in the mirror for my own shortcomings and presumptions, too.

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