What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.