HUFFPOST PERSONAL

The Two Words No Person With A Disability Wants To Hear

I was 36 when my legs surrendered. I was diagnosed with a degenerative disc disease and arthritis a decade earlier, and it had finally progressed to the point where my spine refused to continue supporting my ungrateful body, and my legs put in their notice.

It came as quite a blow. I had always been an active person. Until mere months before becoming disabled, I was walking my children all over the city, staying out from breakfast until dinner. The all-day adventures of my 36th summer suddenly became limped walks to the nearest park by fall, and I struggled to make it to the backyard by winter. It caught me by surprise, and it was terrifying.

I had first sought a diagnosis in my 20s when my back would go “out.” I would have a few days here and there when my back would be acutely sore, and then it would get better. When my doctor handed me the words “degenerative disc disease,” I immediately grabbed onto the word degenerative. Would this mean I would one day be paralyzed? My doctor assured me it would not. She told me that the disc would eventually wear away completely, and my spine would fuse. She even said that once this happened, the pain would likely get better.

This gave me hope. Each time my back would flare up, I reminded myself that this was par for the course. It was painful, but not worrisome. Then came the day it didn’t get better ― or at least, not in the same sense. My occasional but extreme pain from temporarily slipped discs had morphed into pain whenever I stood for more than 30 seconds. The pain from my back had shifted into my legs, and even walking down a hallway or standing in line at a store became unbearable. This was completely foreign to me, and it scared me. But I still didn’t yet believe it to be permanent.

An MRI confirmed that I did have the degenerative disc disease, which afflicts many people and is not generally this major a problem for most people ― I am an unlucky exception. It also showed a bulging disc, arthritis which was poking boney spikes into the nerves in my spine, some inflammation around another disc, and a healed fracture. I had, at some point, broken my back and not even realized it.

Individually, all of my problems were minor and unfixable; but together, they rendered me disabled and unable to walk without pain further than the length of a short hallway without assistance.

None of these problems alone are serious. Individually, all of my problems were minor and unfixable; but together, they rendered me disabled and unable to walk without pain further than the length of a short hallway without the assistance of walker with forearm rests, a shopping cart to lean on or occasionally a wheelchair.

Unwilling to accept this fate, I sought the help of multiple doctors and therapists. The consensus was clear: This just happens to some people. I can try to improve it with physiotherapy, exercise and even some procedures, but all of it will be a lot of effort for minimal improvement. The overall professional suggestion? Do whatever gives me some kind of relief and accept that this is not something that goes away.

The loss of my mobility was indeed a loss. I grieved my former body and the things it could do. I grieved the future I had expected to have as an able-bodied individual. As it goes with grieving, the loss never fully goes away, but I have come to terms with my new normal. I’m prepared to accept my limitations and work with them.

But there was one phenomenon I wasn’t fully prepared for. From the moment of my first vertebrae twinge, my friends and family suddenly became spine experts. They may be educated as teachers, IT specialists, salespeople, and every other vocation, but my diagnosis instantly transformed them into orthopedists. Then came the two words no one with a disability wants to hear -– “you should.”

“You should see another doctor.” I’ve seen several, including specialists, they all agree with the course of treatment I’m following – but thank you.

“You should check out this YouTube video.” Yes, those are the exercises I discussed with my doctor – but thank you.

“You should insist your doctor do more.” I have a caring doctor who has exhausted everything she knows and then referred me to other doctors who know more – but thank you.

“You should get an X-ray.” I’ve had multiple X-rays and an MRI, none of them are very helpful with this type of condition – but thank you.

“You should lose weight.” My doctor has assured me that while being a healthy weight is a good thing in general, I would have this condition regardless of my size – but fuck you.

I grieved my former body and the things it could do. I grieved the future I had expected to have as an able-bodied individual.

I’m well-versed in this last one. I have been hearing “you should lose weight” for any ailment I have experienced since childhood, whether for conditions for which it would help, like my Polycystic Ovary Syndrome (PCOS) or for things completely unrelated. “You should lose weight” is a regular, and particularly unhelpful, refrain.

In truth, I’ve been serenaded by the “You Should” Choir before. Having grown up living with depression and anxiety, I’ve learned that while the waiting list to see an accredited therapist can be months, even years, there is no shortage of armchair mental health experts who are happy to work for free.

Some of the “you should”s have a grain of truth, but are far too simplified. Some of the unsolicited advice is ridiculous and not backed by any credible evidence. I once had a friend tell me that my spine condition and my depression would be cured if only I stopped drinking Diet Coke. It’s amazing that none of the specialists I saw brought up this incredibly simple solution. 

Traditionally, I have met the unhelpful and unsolicited advice with polite disregard. They mean well. Their heart is in the right place, and they’re just trying to help. I know this, and I try to restrain my annoyance to avoid conflict and protect feelings.

From the moment of my first vertebrae twinge, my friends and family suddenly became spine experts.

I’ve stopped doing this. I’ve stopped placating the people who give these suggestions, even if it starts an argument. Instead of justifying my actions or explaining why I, in fact, should not take that suggestion, I simply say, “I have it covered” or “I know what I’m doing.” 

Well-intentioned or not, these “you shoulds” are harmful to people with disabilities. They assume we do not have agency in or knowledge of our own bodies. They imply we are not only uninformed but incapable of doing our own research. “You should” frames suggestions in a way that automatically places the advice-giver in the position of authority, and the disabled person in the role of the helpless invalid. 

When friends and family place me in the position where I must explain not only my actions but my body, it makes me feel as though they see me as not trying hard enough to get “well.” It sounds far too close to you could get better if only you put in the work or did more to help yourself. It makes me feel ashamed of myself and resentful of them. It strains my relationships and makes me avoid the people I most want to run to. 

When I am unable to discuss my disability without being told what I should be doing differently, it removes my outlet for support from those closest to me. When I am in pain or feeling the emotional weight of my loss, the frequent “you should” discourage me from reaching out. Paradoxically, the people who are trying to assist me with these suggestions are instead taking away the way in which they really can help me ― by listening to me.

When I am unable to discuss my disability without being told what I should be doing differently, it removes my outlet for support from those closest to me.

The truth is, unless I ask, I don’t need or want your advice. I don’t want to hear your opinions on my body. I don’t want to know about that article your cousin’s dentist shared or that meme you saw that said turmeric cures everything. The advice you give me is at best redundant, and often ineffective and harmful.

I am the expert of my own body. I am my own advocate. I know what I am doing. My life depends on it. I know it is well-meaning, a lot of harmful things are, but I need you to stop. Living with a chronic condition or disability can be overwhelming. 

If you are genuine in your desire to help your disabled loved ones, save your “you shoulds” and “I heards.” Instead, listen more than you talk. Let them tell you about what they are doing -– what is working, what isn’t. Champion their breakthroughs and let them vent their frustrations. If you do happen to find something you think could help, research it first. Is it credible? Is it backed by evidence? Is it specific? If you genuinely believe it to be useful, ask if the person wants to hear about something you have researched and offer it as information instead of an imperative – and respect their wishes if they say they don’t want to hear it.

My husband has it down to an art. He accepts my limitations without questioning me on their validity. He has readily taken on the responsibilities I can no longer handle, like taking out the garbage and waiting in long lines, while recognizing and supporting my ability to still contribute to our family in the ways that I can.

When we go out, he grabs my walker from the trunk without fanfare and returns it when we are done. When I say I am sore, he believes me and doesn’t try to fix it. When I say I can handle something, he doesn’t question that either. He accepts me, and my disability, for what we are. He doesn’t tell me what I should do but rather listens when I tell him what I need and does his best to accommodate me. This support has not only helped me manage my disability, it has strengthened our relationship by showing me he still sees me as a whole person, and the same partner he has been with for the past 15 years.

I will never regain my mobility, and I have accepted that. I have accepted that I will never again be able to set out on foot for a day of adventure, returning only when the dinner bell rings. I will never run with my children, browse a store pain-free, or move through this word unassisted. I have accepted that there is little medical science can do to help me right now. Each day, I work to relearn how to do things I used to do with ease. I appreciate the love I have received during this process. Please keep telling me you are here for me. Please tell me you support me. Please tell me you are here to help, you will help me advocate and you will be there when I need you. Just don’t tell me what I should do. 

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