This is something I have been talking to my daughter and a few friends about lately.  Yes, I am still sick.  Yes, I can go into a few stores but only if I wear my charcoal mask.  Yes, I can eat out at a few outdoor cafes when they are willing to accommodate all my allergies.   I am upfront about the fact that I have gained a little more freedom and flexibility with regards to being able to dash into Target to pick up a card or item and the fact that I can eat at a couple of outdoor cafes.

Then why do I feel guilty about this?  Why when I see someone I know do I want to hide?  Why do I feel the need to explain my actions (Oh, I can eat here because they have a wrap so I don’t have to worry about yeast, and they will leave out the avocado, and they will substitute the aged cheese for the provolone that I can eat, and I can finally eat lettuce and tomato again.)  For years I have been so severely sick and at times thought I was dying.  Now that I have some freedom why should I feel like I am being deceitful when I am out doing what things I can finally do again?

I have been wrestling with these feelings for a while now and I can’t seem to get rid of them.  I think it is even more apparent now that the book is out there chronicling my journey and my life is out there as well.

I think it is time for an appointment with my therapist.  I should be rejoicing in the newfound things I can do and not feeling bad about being able to do them.

My question to you:  Have or are any of you going through this yourself?

20 responses to “Perceptions/Appearances/Feelings

  1. Yes. I deal with this. First I still have trouble wearing my mask when I know I should and suffer for it. But yeah I’ll be walking and someone will see me and be like — wow you look great — are you coming back to work? Or are you better? And I don’t know if I feel guilty because I don’t look sick or that I’m so very sick most of the time and now I’m going to be judged as faking it. I think maybe it’s almost a reflex to be defensive. I’m not a therapist — but I know as I’ve started to feel a little better — I get afraid it’s going to be taken away and I’ll be back where I was a year ago.

    • Colleen – I am glad that I am not alone in feeling this way. I have been worried about buying clothes that I will have to toss them away as I did before with the mold exposure. This illness brings out a lot of insecurities doesn’t it?

  2. Ooo!! I am so glad you wrote about this! Periodically, I can walk slowly and carefully into a store (with my husband) and purchase a few items. Often, I need to part in a handicapped spot because the extra few feet of walking can be the difference between making it back out to the car or…not. I also feel the need to launch into long explanations about my health, why I can do certain things some days, etc. So yes…I can definitely relate to this!

    • Christine – If I have to go to the store alone, I park in the handicap section in case I get sick and have to hurry out to my car. Seems like we all have the fear of some one seeing us when we are having a good day and thinking “you don’t look sick”. As much as it saddens me there are so many of us that deal with us, there is some comfort in numbers and knowing we aren’t alone. We just need to continue to make the issues of chronic illness known.

  3. I have fibromyalgia and yes I feel like people are judging me at times when I can do something that other times I wouldn’t be able to. You get the whole “you don’t look sick” reaction when you have to cancel or step back from things and then when you can do something I feel like people act like I just pick and choose when I want to be sick. Very frustrating! Celebrate the new things you can do again and go eat that wrap with a huge smile on your face!

    • Thank you. I will continue to do what I am able and when I am able and try and celebrate. I just need to get over this feeling of all eyes are on me when I can do something that I haven’t been able to do in a long time. I am going to email my therapist tomorrow for an appointment. Maybe I will get some tips on coping with this that I can share with the rest of you.

  4. You girls are ALL tooooooooooo darned nice—- in my old age– I don’t feel the need to explain anything to most anyone—unless they are close to me & personally ask me about something– & the ones who matter the most to me–USUALLY KNOW–what I do & why & how I do –things because of my health & the others are proabably talking behind my back anyway— so if they are talking about me– they are giving someone else a break— 🙂 — I really don’t care what people seem to think or say about me— most of the time— AND– I put signs out in fRont of our carport –saying private car port– enter though the front gate– & on the front Gate & out side of our front steps to our MCS safe home —I have signs saying this is a fragrance free & scent free & chemical free property– well when I first put the signs out front– (we live on a resort & at the end of a cul-de-sac) golf carts started driving down to our end of the cul-de-sac- & going very very slow–some on the neighbors hood association board– I think even took pictures-o my signs- & if I saw them –I waved really big to them–( with ALL fingers)!!!! Some people have a lack of a life of their own– & need a hobby–& only want to cause problems for others or talk about others– I personally have no time for those people— & pardon me but don’t give a rat’s behind what they think!!!! ALL of you GIRLS ARE SOOOOOOOOO DARNED NICE!!! I need to hang with ya more– so maybe I would have a better attitude— & care what more people thought!!!!! 🙂

  5. Pingback: Perceptions/Appearances/Feelings | allergictolifemybattle | sondasmcschatter

  6. I am so glad you shared this and increased my awareness about the chronic illness you and others suffer and its many ramifications. I am blessed in that I do not have any allergies and my only experience remotely like yours is when I was receiving chemo and had the bald head, sunken eyes, and grey color. My perception is that people did not want to give me eye contact and I was less comfortable going out in public. My situation was different from yours, but the bottom line is “The Golden Rule.” What a wonderful world if we all could truly live by that.

    • Thank you Karen. I am nearly done reading your book “Outshine Ovarian Cancer” and all I can say is you are an inspiration to me and others. Thank you for writing your story. I will put up a review when I am finished reading it.

      Your situation may have been different but it was still an uncomfortable experience.

  7. It’s so frustrating and it must be very difficult for you. I do empathize.
    As my therapist suggested to me, “celebrate the small successes!” At least recognize them and do something to celebrate even if you are celebrating by yourself. The small successes eventually add up to larger successes.

  8. Invisible illness. We can look great and feel lousy. No one likes to be judged. People ask me, “Are you working?” I can manage my MCS so I look and feel pretty good. Can I work? No. A single day would make me voiceless, breathless and in pain. It is hard to explain that to people who don’t really understand.

  9. I have definitely had these feelings. And the opposite of these feelings – feeling happy? when I get really sick because it confirms I’m really sick. There are a lot of mixed up jumbled crazy feelings that come with illness – I think it’s normal.

  10. Keep focusing on the good days. I’m back in physical therapy. The doctor ordered a gel to use for the hip pain and it worked beautifully until I started PT. I think my body’s not happy with being stretched in ways it forgot it could go. I keep focusing on the 3 whole days of being pain free; hoping my body will remember those and forget the pain.

    • I am doing that. I have had a few not so good days after a reaction Friday night. I am thankful tomorrow is Catch Up Monday so I could post something without having to write anything new. I am just plain pooped. I plan on writing more about my talk with my therapist soon.

      PT is just plain hard. I have done it after knew surgery and again a few weeks later when someone rammed into my healing knee. I have also done it after carpel tunnel surgery and for frozen shoulder. May you get through it and remember the good days. Hang in there.

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