Chronic Illness and Going Out

disability

It is true, the healthy don’t understand what it means to have a chronic illness. I used to get upset when my friends would say, “Hey, I’m coming in to town, want to meet for dinner?” Or, “We aren’t going to be out long, we’ll just be sitting there, you can do that right?” I wasn’t upset in an angry way, I just felt misunderstood and invisible. Dismissed. Isolated. Alone.

You really have no clue what I’m going through, do you? 

When I was healthy, I didn’t think twice about how much energy it takes to do the seemingly simple activities of daily life. With autonomic dysfunction, getting out of bed is a task. When I stand, I feel like the floor is pulling me down (as if I could get any lower). I feel the immediate need to lay back down. If I don’t, if I push through and try to walk downstairs, I get short of breath and lightheaded. My blood pressure drops because the nerves that are working to move the blood from my lower body up to the heart aren’t functioning properly. The blood pools in my legs and lower abdomen which reduces the amount of blood that can feed oxygen to the heart and brain. The body tries to make up for this loss of blood volume and tells the heart to beat faster. My heart rate is as high as a healthy person’s when they work out. And that’s just standing.

The shower. The bane of my existence with autonomic dysfunction. Even in healthy people, hot water dilates the veins and can drop the blood pressure. For those with autonomic dysfunction, we come to the shower already with low blood pressure (from standing). The hot water itself causes lightheadedness and fatigue. On top of that, lifting my arms above my head to shampoo my hair can be disastrous. When I lift my arms, gravity takes over and the blood rushes down into the lower half of my body, pooling, and again seemingly lowering the blood volume to the heart and brain. My blood pressure drops more and my heart rate increases. Autonomic dysfunction can also make it difficult to regulate your body temperature as the nerves that regulate the sweat glands don’t function properly. Hot water in the shower causes redness, lightheadedness, and a general discomfort.

chronic illness shower

If I survive the death trap that is the shower, I feel like I just ran a marathon. But, then there is getting dressed. Gone are the days of standing in front of my closet wondering what to wear. At this point I usually just throw on the easiest outfit to put on or whatever is in front of me. Makeup. Drying my hair (again with the arms above my head thing).

Now I’m ready. Ready to be presentable in the world and I’m tired. And it’s not a normal tired. It is fatigue. That feeling that you really can’t put one foot in front of the other. But you do because you want to be normal. You want to participate in that thing called life that has been passing you by for years.

So I make it to the car where I can finally sit down. And I tear up because I’m thinking there is no way I can do this. There is no way I can go and be that happy, lighthearted, spontaneous person I used to be. I’m in pain, short of breath. Moving my arms to turn the steering wheel is a work out.

When I pull up to the restaurant to meet my friends, I have to sit a minute and gather my thoughts. I try to stuff down the fatigue and put on a smile. Think happy thoughts. I get out of the car and immediately my blood pressure drops and my heart rate increases. I walk inside and by this point I’m working hard to catch my breath. I see my friends at the back table and wave as I make my way there. Hugs. I sit down.

“How are you, Sarah,” they ask.

“Good,” I lie.

“You look good. You don’t even look sick,” they say. They mean to be encouraging, but really it feels dismissive.

I sit through dinner adjusting my position every five minutes because it hurts to sit. I listen to my friends talk about their adventures, their dates, their kids. I feel inadequate because I have nothing fun to talk about. I’m getting more tired. They talk about their work and how much it sucks and wish they could do something else. I would give anything to be able to work. But I don’t say that, I just nod in agreement remembering the time when I was healthy and work was a chore not a privilege.

After dinner, they are going to get drinks and I can’t go because I’m tired. Sitting at a table for an hour is work for those with chronic illness. They try to convince me to come, promising they won’t stay long. And I have to remember that they don’t understand. Healthy young people don’t understand what it took to get to that dinner. They don’t understand that my payment for meeting them tonight is that I won’t be able to get out of bed tomorrow.

I don’t blame them for not understanding. How can anyone understand a circumstance that they have never experienced? I don’t blame them, but I feel alone. Driving home, changing clothes, laying down, forgetting to wash my face, but not even caring because I’m finally laying down. I’m back in the bed, and it feels heavenly. The only place I feel like I won’t pass out. Until I realize it really is a prison. The allure of feeling decent keeps me chained there. And I try to fall asleep so I can escape.

25 Comments on “Chronic Illness and Going Out

  1. I have autoimmune disease which encompasses a whole host of maladies, but I ‘look’ not to bad. I can completely relate to this post in every way. Will keep you in my prayers.

  2. Thank you so much for writing and sharing this!! I know that before I had a chronic illness I did not understand what people go thru. Nor did I understand that on a good day a person tries so hard to do”normal” it can completely destroy you for days!!!
    My thoughts and prayers are with you. THANK YOU!!! You have made chronic illness sufferers feel not so alone in their “prison”.

  3. I have MS since 2002 and this article explain better than anybody could tell me about what makes me so fatigue after a shower and just walking with my walker. Thanks so much

  4. Thank you for your candor and transparency. I have 3 major medical conditions that keep me home, unemployed and disabled. I also had to move back home losing all my friends and the community I called my own for 8 years. Only one friend keeps in contact with me.
    When you talked about having nothing to talk about I totally understand, because I’ve had the same problem. What am I going to talk about when I spend my days going to doctors, taking naps or going to my pharmacy…I don’t want to talk about my illnesses but I just don’t have anything to talk about.
    My Family (which is my parents) & my dear friend Conni and my amazing dog Philicia keep me sane and cared for. I’m blessed that way!! Take care of yourself Sarah!! I will keep you in my prayers!! (((((Hugs)))))

    • I can totally relate to not having anything to talk about besides illness, doctors and meds! When I was at my sickest (happily my symptoms have decreased significantly and I’ve beem working FT for over 3 years now), my family put a moratorium on me talking about anything related to being sick. There was nothing else in my life, most of my friends had “disappeared” and the ones who were still around were busy with their own lives. I had nothing to say because there was nothing else.

  5. I’ve had CRPS since early 2012. I had an old high school friend ask me yesterday to start one of those ‘do-it-yourself-work-from-home’ businesses. I had to explain that right now, the only work I’m doing is working on finding a way to get out of bed everyday.

  6. I can so realte!! I have a couple chronic illnesses and if I do have the energy to get to the place I will likely have a reaction to chemicals or fragrances in the place and be unable to eat any of the foods. Then like you I pay for it the next day or days.

  7. really enjoyed your piece; can totally relate to it as i also have a chronic pain disorder.

    you’re right — you can’t blame someone for not understanding. i’ve found that i can’t even have close friendships with people that don’t understand. i’ve lost a few old friends because of that. but…i think that i’m better off without them. it gives me more time for friendships with people that do understand. in the end, those are the friendships that are truly meaningful.

  8. Hi ,I’m sorry that you’re having such a hard time. I certainly can relate. I have an immune disorder and pots. The shower is the bane of my life too. I have found putting one of those shower seats in there to be a life saver and it helps me save some energy. I also throw on whatever is closest including sometimes mismatched socks whereas I used to take an hour to get ready and was a fashion plate. :/ Frequent rest and doing my chores a little at a time is my new normal.
    I find that healthy people, no matter how close, will always seem to have a hard time understanding. Sometimes I share with them the theory of the spoons if they seem really interested. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
    Regardless of what people think or do you have to take care of yourself because you are the only one who knows what you need. At some point it will seem to get easier as you become more used to what you have to do, at least that is what has happened with me. Best wishes.

  9. Thank you for writing the blog post that I don’t have the courage to write. I feel so obligated (my own baggage!!) to only be encouraging to others with chronic illness. I feel like I don’t have the right to “tell it like it is”. Like I might offend or bore those reading that come to my blog for other reasons but not necessarily chronic illness issues. In other words – I hide myself even from those who care most to listen. It’s crazy.
    So I am incredibly thankful for your guts. For your daring to risk. For your vulnerability. For in it I feel understood. NOT alone. These diseases are terrible things (my recipe is Lupus, Sjogrens, RA and a host of other less known autoimmune issues), destroying our lives and doing so in such an invisible fashion that we truly find ourselves suffering in darkness.
    I consider myself to be incredibly fortunate. I immediately qualified for social security disability. I have a HOST of wonderful friends who support me. I have a huge social media support system and I have a family that is as good as it gets. My husband is my rock. But even in the best situation – after being sick for almost six years now – I feel lonely most of the time. And like you, I don’t blame anyone. How can I? I imagine myself in their shoes and I would be a thousand times worse. In fact, I am learning a lot about my old self and I think that I would be a terrible friend on “the long haul”. Even those who love us most have to figure out how to move forward. And in doing so, things become routine. “How are you feeling today?” seems more like the routine question of the day than any kind of heart felt interest. When meeting friends after months of not seeing anyone, those inquires seem like part of a check list. “See how Theresa is feeling…check!” and we’re on to the latest subject de jour. Am I angry – absolutely not. Am I incredibly lonely – every single day. Honestly, my work these days is in trying to figure out how to come to terms with that. I’m never going to get well. I’m 49 years old and if this illness does not kill me while I am still young, I have a lot of years left to deal with this. How to accept these things and not become bitter or depressed is a difficult thing and it takes daily work.
    Thank you again for just laying it out there. I’m so glad that you did. Keep writing!!

  10. Thank you for this. My best friend has POTS & I really appreciate being able to read things like this so I can understand a little more of what she’s going through.

    It’s hard to be honest about your difficulties in any situation, and it must be even harder when you feel like the people you need most are completely incapable of relating, but please keep trying when you can. I know at least some of us really want to understand the best we can.

  11. I’m the same way it’s as if my mind goes blank can’t remember what I was gonna say unless I say it to myself for a few then they are like what were you going to say? I’m like nothing cause I forgot but I think people must think that I’m playing it up and I’m not but I’m like that some of my family doesn’t understand me so I just have to put on my mask and try to not pass out cause I know some people think I pass out on purpose and it really Does hurt me more than passing out so if somebody is like you wanna go well you need to get out of the bed and house and I’m thinking about going but I don’t think that I can it’s like go ahead get mad at me for not going cause I feel like I’m going to pass out then there are times that I feel like getting out of the house but if I do and pass out they get mad it’s like I can no win either way!!

  12. God bless you Sarah Beth!!! After 23yrs , of living in this “World of Chronic Pain”
    and a dark world it is, I have learned from the reactions and responses from so many people, compassion and empathy, …is basically non-existing! I’m 54yrs old and I can express easily what I must deal with on a daily basis. I have educated myself to my Chronic Illnesses and the myriad of accompanying symptoms associated with my diagnosis. And I too am fed up with a same dang responses or questions from closed-minded, family and friends, alike! Printed dozens of pertinent information on what I live with 24/7 , and still they information lies and collects dust from not being read…even if I am with family and friends, I ache with pangs of loneliness. The chronic fatigue.The insomnia , trying to function properly while sleep deprivation consumes my spirit, feels as if I am slowly sinking further and further into the quicksand I stumbled upon while walking around. I have fallen down the basement steps too many times. Two yrs ago I diagnosed with a concussion…what pissed me off the most was when I asked my sister, whom I am currently living with, could you please take me to the ER, sis?..and her response was,I am too tired!. Reading what you are having to endure, was as though I myself had wrote it. WOW!!! Thank you for openly, and passionately shared with everyone…I feel your pain and suffering. I know what the illness does…how it changes your life and the person you used to be. My heart goes out to you and all who suffer from Chronic Illnesses..keeping my prayers going..take care and God bless you and your family and friends.

  13. Oh my goodness you so nailed this head on. I am diagnosed with lupus. This is what I feel every day of my life. I can no long-term work and I am fighting for disability now.

  14. Thank you for this blog post. I’m struggling with losing the life I once had. Being the person who gathered all the friends together. The planner, we built this house, designed it with our friends and family in mind. So I could have the room to cook and host every holiday meal for my children and fRamily. A place where everyone was welcome. I had always had health problems but 5 years things got much worse. Now five years have gone by, I feel alone. I can’t leave the house at will. My friends have mostly moved on. My children have grown, and I don’t want to be a burden to them or my husband. But I know I am. I stopped getting the phone calls and texts and visits from my friends. Occasionally I’ll get an invitation, but most are last minute, or only pity invites because I happened to see a fb post. Or worse I hear about things after they’ve already gone out. I try to invite them here, which I never had to do before. It was just a given, gathering at my house. No invitation required. But they don’t come. I know I’m no fun to be around, I can’t drink or dance anymore. I’m lucky if I can stay awake for more than 3-4 hours in a row. Going to dinner is just about impossible because food is my enemy and I don’t know how I will react or how much pain even a few bites will cause. I just want my old life back. And it will never be the same again. Thanks for reminding me that someone out there in this big world is going through the same. I only wish they lived next door.

  15. thabk you for sharing. I have POTS and dysautonomia and can relate 100%.

  16. Hi. Thanks for sharing something that is difficult and very personal. I can 100% identity with wht you said and your daily struggle to function. I am very similar and struggle with people’s comments who don’t understand but to be fair unless you re in it or loved one suffers in the same way people have to experience it to understand. I once wrote a description of my daily routine,very similar to yours to someone who was giving me a hard time at work (when I did work) who hadno understanding of my situation and it did help. I think sometimes honesty often opens people’s eyes to our situation but on the other hand we don’t want to be constantly explaining ourselves, so I’m sure wht the solution is. Thank you for sharing.

  17. Thank you for posting this. It is the exact truth. I have tried to tell my girls, the older ones who don’t live at home any more, but they just don’t understand. To go to the grocers means that for the rest of the day and at least tomorrow, I’ll be down, in bed or at least non-responsive to anything, due to pain and fatigue. It is a hard road. My 15 year old girl has Chronic Fatigue and all the things that go along with it. She understands. She does school at home, as public school was too much for her. I hope one day that all of these type of diseases are taken seriously. We’re not lazy, we’re sick.

  18. Wow, it sounds like I wrote this! The struggle is real. I am a disabled RN with fibro, CFS, POTS, raynauds, brachial neuritis, etc. Thanks for writing this! I wish more people understood.

  19. I am so grateful to have found this site! I am also an RN trying to cope with chronic illness, medicare (disability), docs, the healthcare system and the loss of who I was. Everytime I am hospitalized I secretly wonder if the nurse or doctor talking to me knows how lucky they are to be “on that side of the stethoscope”. My illness has changed my entire outlook on life…in some ways for the better and in some ways not so much.

    A friend told me the other day about a young woman she knows who is 33 and has cancer (the specific type was not mentioned). My friend said the young woman was going through chemo while caring for her 2 kids. The next words my friend said floored me. “I am so proud of her as she never complains, keeps a happy attitude and is nice to be around like she did not even have cancer.” My reaction, in my head of course, was how sad. Sad because I bet this young woman is probably lonely and needs a friend to talk to about cancer. I was also sad because my friend had no idea how insensitive her comments were. If I mention I am tired or having trouble breathing am I not nice to be around. Why was my friend proud? This enounter started my search for others on the web who have chronic illness, especially an illness that others cannot see.

    I want to know how others have changed due to illness. I want to hear I am not the only one who sees the world differently now. I found what I needed to hear on your website!

  20. You put everything into words perfectly. Chronic illnesses can be isolating, but venues like these help me realize I am not alone.

  21. I really felt good to see that so many other ladies have so many Illnesses Like mine, But they can’t be seen like the sicknesses that I have struggled with for the last 22 + years. After 3 of my sisters fell prey to them and my brother also, we finally found out that they have run through the female side of my family. We all have Bone Spurs, that is growing on all our spines & joints, the pain has been almost unbearable at times, and if it was not for pain management, we could not bear to even live…Thanks for your In formation. May you each be Blessed…

  22. Hi I know this thread hasn’t been posted on for a long time but do any of you have bad memory problems and are unable to make a conversation? Do you find it hard to focus on tv?

  23. This is so relatable. Some people will never truly understand until they themselves have to face a similar illness.
    Thanks for a candid shot into your daily struggles. The more we share, the more we help educate the masses.

  24. I know exactly how you feel! I am an RN an work full time , and it’s so hard. I have been diagnosed with POTS, fibromyalgia and lupus. Most days off I don’t feel like getting out of bed, and people just assume I’m lazy. I pretty much have no friends because I never feel like going out. I’m doing good just to take a shower. My family definitely doesn’t understand and are tired of hearing me complain. So I just tell everyone I’m good when they ask although I always feel so horrible. No one will ever understand unless they have to go through it. As a nurse I am definitely able to show empathy for my patients with chronic health diseases. Thank you for posting this article. It lets me know what other people go though in this battle. Prayers for you.

Leave a Reply

Your email address will not be published. Required fields are marked *