I once accompanied a friend to her breast biopsy. The cheerful nurse, trying to be helpful said “some women go back to work right after the procedure.” WHAT?! You see, I’m a breast cancer survivor. I had that very same procedure and I can attest to the fact that even Iron Woman could not “go right back to work.” It’s painful and you feel like crap afterwards.You also have an ice pack on your breast. Telling a woman that, sets her up for failure when she can’t go right back to work that day. She then feels like she must be that one weak woman who just doesn’t have the “metal” to get through this like everyone else. NO!
I pulled the director of the breast center aside and explained what had happened. I calmly said “DO NOT EVER say that to another woman.” I then explained why. As far as I know, that practiced has ceased.
The same thing occurs in the disabled community. It’s very easy when you haven’t “stumbled” or “rolled” a mile in our shoes or wheels to make judgements. Judgements as to what we should or should not be able to do. Even people living with the same disease travel very different paths. For example, some people living with MS do quite well while in the remitting phase. They may have very long periods of remission. Their symptoms may be minimal. Until they relapse. Others, may have horrendous symptoms and be progressive. Either secondary or primary. The fatigue alone can be crippling at times. Heat? Well, that will just set you back a mile. Muscle spasms? They like to pop up out of nowhere and stop you dead in your tracks. The list goes on.
The same is true of Parkinson’s, MSA, FA, ALS and any of the other disabling diseases. They are a continuum and unpredictable. Most in fact, quite sadly are fatal and as of now have no cure.
There’s also the time constraint of doctor appointments as well as physical and occupational therapy to consider. Also, medication schedules. Some, are quite extensive and despite the latest claims on the internet or what some “friend” told you, these medications ARE necessary. So much time is spent just trying to “maintain.” And don’t get me started on the time it can take to simply get dressed and out the door! When you have dexterity issues, getting showered, dressed and yourself looking halfway decent takes much longer than it used to. It can honestly be overwhelming on “bad days.” Some days, you simply can’t and that’s okay. I’m convinced now, that’s why God created sweats and yoga pants.
My point is, unless you have been me or the other person living with one of these horrible, debilitating diseases, please DO NOT comment on how we should live our lives. DO NOT comment on what we should or should not be doing. For only we and our doctors know our limitations and what’s truly in our best interest. We in the disabled community deal with enough discrimination and judgement from the public. We honestly do not need more.
Because unless…… you do not know…….
wilamenapants 
Two thumbs up! If I had more thumbs, they’d be up too!
I too had a breast biopsy done years ago and there was no way I was going back to work that day, no way. But was told I could drive to and from the dr and go to work. I didn’t do either, thank goodness I had someone with me.
I am also (somewhat) physically disabled. Some days are good, some days are not so good. On the not so good days I use a walker. I hesitate to go out on the not so good days because I can feel all the eyes looking at me.
It’s rough out there and John Q. Public doesn’t make it any easier.
Thank you for ALL you do. Enid
Sent from my iPad
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AMEN, sister!!! ❤
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Well said !!! My mother always taught us, don’t judge until you walk a mile in their shoes. A lesson to always remember.
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WOW, very well said & totally agree.
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Well said Lynne. Nicely written
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As a 65 year old woman diagnosed with MS and femoral nerve damage from a fractured pelvis 3 years ago, I stand and cheer your comments. I feel as some people judge me for not trying hard enough to walk better. It’s hard, I can’t do better. You are an inspiration. PS. miss you at Crazy Acres comments. Your art on the barn there is spectacular.
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Thank you. Actually, the artwork is Renee’s not mine.
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Your timing is spot on. I was sitting here worrying about what I’m going to do, afraid of what’s to come, stressed out trying to figure out how to accomplish my next steps, on the verge of tears. I am going through the process of filing with Social Security to get on disability. I’ve put it off for so long, because once I put it down on paper that I am disabled – it becomes true. That I am less than I was, weak, not in control of my body and mind. I need to convince a bunch of paper pushers that I can’t even hold a job anymore. I have to convince faceless strangers that I am sick, incapable of physically and mentally living a “normal” life. As if I’m not already depressed enough, I have to put all my shortcomings on display for people I don’t know and they don’t know me.
I feel anxious, embarrassed, and I am so afraid. What if I fail? These faceless strangers have told me that I can work at a sedentary job. They haven’t even met me, they don’t know. So now I have to go to a psychiatrist, (another stranger) so they can determine if I really am depressed and suffer from anxiety. Anyway, as I started this note, your timing with this essay is spot on, it helps knowing others understand, and have been through these horrors. That others have gone through this degrading process and survived. If others understand what I’m going through, maybe, just maybe, one of those faceless bureaucrats, that have to judge me, will understand too. Thanks Lynne for the boost in spirits.
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You’re never “less” just different. Also remember, you didn’t choose this. You have nothing to be ashamed of. Hang in there, while the process is difficult, there are truly two ends of the tunnel. Just focus on getting to the other end.
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