Something you shouldn’t say to someone living with a Chronic Illness

 

Quite often I see posts on social media about annoying things people say to someone living with a chronic illness. One of the most annoying comments is You don’t look sick. Referring to the fact that if we maintain a somewhat normal life and appearance. Do our hair and makeup. We must not be sick. As wrong and annoying as that comment is for me I find it more annoying when I have spent 2 to 3 hours to make myself look good and there is always that one person that wants to point out the one thing you missed or maybe just chose not to do. I’m thinking hey I look good. I might even go as far as to say (looking in the mirror) hey girl you still got it going on :). I know what I looked like before and what it took to get myself ready.

It’s an everyday struggle for me taking a shower and doing my hair. Where it used to take me 35 minutes to get ready it takes 2 or more hours now. Thirty-five minutes was everything. Shower, hair, and makeup. Showering is a struggle in itself because the rapid temperature change brings on symptoms like fatigue, dizziness, tingling, weakness of the legs, and sometimes vision loss. I haven’t taken a shower without hanging on for dear life when I wash my hair in six years. When I get out of the shower I’m dizzy, weak, and exhausted. It takes me about 20 minutes to get my clothes on. As an example of the weakness I’m speaking of imagine how hard it is putting a bra on in the first place especially right after a shower. Now try to put your bra on with a fifty-pound weight on each shoulder. That’s what it feels like to me when I raise my arms. Keep that fifty-pound weight in mind. It’s still sitting there on your shoulders now try to dry your hair. My arms get so tired I have to stop and rest them often. So, drying my hair takes 30 to 45 minutes. Putting my makeup on is the easiest part about getting ready. The only part that I find difficult is putting on eyeliner and mascara.

Now that you have some idea what it takes in my daily life you can understand why most days I don’t do my hair and makeup. When I do it It’s for me. To make myself feel better. So, I don’t feel like a slob walking around in sweats and a ponytail all the time. Even on those days I generally compromise because doing my hair is so difficult. I just do my make up and let my naturally curly hair do its thing. Sometimes it’s a little frizzy because I live in a dry state but most of the time it looks decent. Or so I thought.

The reason for this rant. Recently we had company over. One of the individuals ( J ) said to me. Shannon, you dyed your hair! First, I was a bit confused. No this is my natural hair color, I said. Red or as I call it copper. Just then another individual ( A ) said No! but she needs to. Confused again. What is wrong with the color of my hair? Ok…..whatever. Just smile and let it go. Then A says but at least she did her hair this time! Last time we were here she didn’t even do it! I just smiled again. J said your hair wasn’t done when we were here the last time? And then there it was. Before I realized it, I couldn’t bite my tongue. I said no J, I didn’t I was so weak by the time I took a shower and got dressed I decided you know what this is my house I’m just going to let it dry naturally! I did do my makeup though so I wasn’t a total slob!

Ok looking back I probably shouldn’t have let it bother me. Generally, I just let things like this roll off my back. I’m having a relapse right now so the last 3 weeks have been tough. I’m even weaker than usual so the fact that I had accomplished a shower and makeup that day was a big thing for me. I also know that I don’t usually tell anyone how I’m feeling. So, they can’t know what a struggle it was. Even when I do on rare occasion there is no real way for them to understand.

My problem with the comments was not only is it something you should avoid saying to someone with a chronic illness but just rude in general. It’s not something you say to anyone in my book. I’m all for being real! Trust me if a friend is wearing something that doesn’t look good I’m going to let her know. If I notice something about a friend’s hair I might say you should try this or this would look good on you. There’s a time and place for these things. If it’s just us girls I’m going to be straight with you. If it’s something you need to be aware of right away I’m going to pull you aside or quietly tell you. I’m not going to put it out there in front of everyone and I’m not going to say it in a hurtful way as if there is something wrong with you or indicating you’re lazy. I don’t know why the comment was made. May not have been intended to be hurtful but why was it said anyway. Why did it matter if my hair was done? I was in my home!

What I hope will be taken away from this post is that we don’t know what anyone is facing in their lives. Maybe we can all do a better job of stopping to think about what we say, how we say it, or when we say it.

 Thumper says it best  “ If you can’t say something nice don’t say nothing at all”   

 

 

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46 thoughts on “Something you shouldn’t say to someone living with a Chronic Illness

  1. I had a shower washed my hair this morning & it does wipe you out. Also it is nice when people say ‘oh you look well’. but to be quite honest MS is invisible. you can’t see my fatigue or pain, But I suppose they are just being nice- so often just smile

    Liked by 1 person

  2. Hugs to you!! You are so right, about how we all need to think more about what we say! Words can hurt and yes we so often don’t understand everything the person is going through and we make false assumptions. Good post!!

    Liked by 3 people

  3. I totally agree. I get ready in stages hoping to avoid the fatigue as much as possible. Everything that use to take minutes takes hours everything I do is a struggle. However I have a brush from con air called the spin brush. Takes a little getting use to but spins your hair with a push of a button. It’s a godsend for my hair. Still hard but easier than trying with a brush.

    Liked by 2 people

  4. I think my grandmother’s saying was even better: no matter who you are talking to, first find something to compliment them on. Another one was that comments and/or suggestions for improvement could only be verbalized between people who are extremely close to each other, and ONLY after first complimenting on something. I am so sorry that you got emotionally hurt by insensitive people!

    Liked by 5 people

  5. “You don’t look sick.” My answer? “You don’t look like an idiot but I think we are both wrong.” Yes I did say it. She didn’t get it so I walked away. Or the ever popular “thanks, that’s what I was going for.” Yep used it too.

    Liked by 3 people

  6. I just say, you should see me on days when the MS is really bad. That pretty well shuts people up. I wrote a response on PLM dealing with bossy, pushy people, that said (in shorthand), “My life is my life. I can do what I do without having to justify it to you. If you are a friend, bring lunch over when you come. But don’t you dare comment on my dishes. They’ll get done under the full moon.”

    Liked by 2 people

  7. I can identify with all of this. My issue is my back and neck and weakness in my arms and legs, so yes, showers and hairwashing/drying/getting dressed are just as difficult and exhausting. There are times when I go to bed fully dressed and even with my trainers on! At one stage I didn’t have a shower or hair wash in 5 years, I was flat on my back in bed. I got my son to shave off my hair. How liberating that was! The other thing not to say to someone with a chronic illness/disability: you’re so brave! I’m not, I don’t have any option! I’m sorry you had to cope with such a situation among friends. I haven’t had friends for years! They drift away after a while when you can’t go places or do things and when you never know until the last minute how you’re going to be and have to let them down. But that’s fine. I like my space and I like ‘meeting’ like-minded people via the blogs. Keep on keeping on! 😊👏🏻🙌🏻

    Liked by 1 person

  8. I hate it when people comment on my appearance, or other peoples’ appearances. It’s just the least important thing about us – it ignores our personalities, our struggles, our kindnesses, just everything! If I have put on make-up, done my hair etc it is to make myself feel good, not because I care what other people have to say.

    I cannot even begin to understand your struggle with MS, but thank you for writing this – it made sense to me in other non-MS related ways, and I got strength from it, so in return I send strength back to you. xo

    Liked by 3 people

  9. I know exactly what you mean – people can be so thoughtless. I once had an episode of excruciating back ache, i couldnt sit, i couldnt lie down, and if i did I couldnt get up. I visited the hospital where my husband works where we met an acquaintance. She looked at me and said, “if I came to the hospital every time i had a backache…” she shook her head as if I was making a mountain of a molehill. The pain of those days has faded but not her unkind words. Yet it is also a fact that we cannot change others, we need to change ourselves and our own reactions. I am trying – clearly not very successful 😀 Take care 🙂

    Liked by 1 person

  10. I was at our monthly self-help group this morning. We all talked about how getting up in the morning, getting dressed, take a shower so on so forth, was so tiring! (Not in that order) It’s good to know that some people understand and agree. Know that I am with you! I have started leaving my hair curly. I used to dry it and then use a flat iron. I can’t do that anymore. Plus my hair is getting curlier by the minute! And it’s a lot of work to make it straight. So I just leave it curly.

    Liked by 1 person

  11. The day dad died he walked to the gate as if for one last look, Stan, a neighbour was passing “Hi Fred still looking good I see, how are you keeping” Dad looked up and answered, “”Me, I’m fine, its all the others Stan” He lifted his hand and came indoors. The point is he did look good his looks didn’t pity him. I asked why he made his usual quip when I knew he was at his worst. He said, they ask how you are to make contact, they don’t want to be weighed down by me. Dads look didn’t pity him with one lung cancer and the stomach. Looks are not everything you learn more by listening. Take care lovely lady, and do your make up for yourself regardless of others, unless your sharing their bed what business is it of theirs.

    Liked by 1 person

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