Woman with eyes closed and text 23 things people dont realize you're doing because you have chronic fatigue

23 Things People Don't Realize You're Doing Because You Have Chronic Fatigue

To an outsider, things like taking the elevator instead of a flight of stairs or turning down party invitations might look like a reflection of your personality. But to a person with chronic fatigue, these can be coping methods that are essential to getting through the day.

We asked our chronic illness community on Facebook to share what things they do that others may not realize is because of their chronic fatigue. Their answers reveal the adjustments that often must be made in everyday life to save energy, and that healthy people may not realize how much of a difference these strategies make.

Here’s what our community told us:

1. “Make sure I have a ‘buffer day’ in between any exhaustive event and resuming life.”

2. “Wearing PJs most of the day if I’m not going out. Some days it’s too painful to move and I can’t do simple chores around house. It’s embarrassing at times. I feel bad.”

3. “Planning my showers. I made a comment at Christmas about how I wish our shower downstairs worked because most days I’d like to get take a quick shower but I don’t want to climb the stairs. My husband’s sister’s boyfriend said, ‘Wow, you’re so lazy.’ I was seeing red at that moment and it literally took every bit of willpower to not lash out at him.”

4. “I have to plan everything based on what I need to get done and how much energy it’s going to take out of me.”

5. “I lean literally all the time. On walls, on tables, on people, on carts. I get panicky if there isn’t something to support myself on.”

6. “I micromanage every single aspect and moment of every day to determine what I can and can’t do and figure out how to get things done. This in itself is exhausting.”

7.I don’t invite people to my house. It’s always a mess and I feel bad about that because I just don’t have energy to keep it tidy. I wear PJs all day every day unless I absolutely have to go out. My home is my refuge from the business of the world. The one place I feel comfortable.”

8. “People didn’t realize that at 25 to 33 years old my dad drove me places a lot because I had brain fog from chronic fatigue.”

9. “Finding a quiet room at work to close my eyes and rest in the middle of the day. Sometimes, just being away from people for a few moments allows me to recharge just enough to push through.”

10. “Exercise. It sounds counter-intuitive but if I don’t my symptoms get worse. So you stretch through the pain and push just the right amount.”

11. “Curling up under a mountain of blankets. The weight comforts me and makes me feel grounded. It stops the spasms that rock my body as well.”

12. “People often compliment me when I wear one of my wide headbands. Sometimes I let them in on the secret and say, ‘Thanks so much! It’s because I’ve been too tired to wash my hair so I’m covering it.’”

13. “Always wearing comfortable, non-restrictive clothes so at any given time I can lay down for a bit when it gets too bad.”

14. “I have myasthenia gravis and it can make chewing and swallowing difficult to impossible. In the evening, when I’m most fatigued, I often can’t finish my dinner. Waitresses insist on asking multiple times why I didn’t finish. It’s actually very intrusive. I should only have to answer yes or no to ‘Can I take your plate,’ without an explanation!”

15. “I spend a lot of time counting steps. For example, at the movies I know exactly how far the bathrooms and exits are. I’m not going to be the first out but I bet you I’ll make it!”

16. “Keeping my hair short. It’s out of practicality. Less hair to manage, brush, and wash saves valuable energy.”

17.Ignoring texts or phone calls because of severe cognitive difficulties and/or too tired to type or talk.”

18. “I eat microwavable food so I can eat instead of leaving half cooked food all over. I burn food from forgetting it on the stove or end up dropping it on the ground by accident.”

19. “It’s sometimes hard to explain to friends and coworkers why I take the bus two stops instead of just walking, or take a taxi when I could take the subway (all those stairs!)”

20. “I always got anxious about the invites to parties across town and the offer to just ‘crash on the couch.’ I’d usually go and just not drink. Not because I didn’t want to ‘party,’ but because I knew I wouldn’t sleep on a couch because I have such a hard time sleeping and because even one drink would make me feel horrible. Always got ‘party foul,’ ‘Stop being a drag,’ ‘Just one shot’ — Nope. A night out would equal about two days down.”

21. “Wringing my hands and wiggling my legs or rocking back and forth. I look like I’m rubbing lotion on my hands all the time but really I’m trying to ease some of the pain through my own body heat.”

22. “I always have to get a carriage at the market even if I’m only getting a few things — I need it for support or by the end of the trip I’ll barely be able to get to my car — the worst part is just standing in line to cash out! That can actually ruin a ‘good’ day.”

23. “I don’t leave my house on Mondays. I frequently overdo it on the weekends with family and friends. So I need a day for recovery — I don’t open the blinds, I don’t answer the door, I unplug/turn off the phones, and stay in bed resting until I get up to make dinner.”

What things do you do that people don’t realize you’re doing because of your chronic fatigue? Share in the comments below.

23 Things People Don't Realize You're Doing Because You Have Chronic Fatigue


Doctor explaining something to patient

When My Doctor Looked Me in the Eye and Told Me I Was ‘Legit’

At the beginning of my health journey, I was turned away by doctors for months. While I’ve had a pretty good run lately, those previous doctor’s appointments scarred me. 

After getting infection after infection and having critically low white blood cells and antibodies, my doctor suggested a month-long round of antibiotics until my immunology appointment. I was happy because I wanted to be healthy, of course, but after a second, I said something strange: “But don’t I want to be as sick as possible for the appointment? I mean, I want to seem legit.”

Yes, I know that sounds like I’m just trying to get attention, but imagine living in my body where you feel terrible all the time, but on the outside, you look like all your peers. 

Then my doctor turned, looked me in the eyes and said, “One look at your file and he’ll know you’re legit.”

This statement may sound unimportant, but to me it glued my scarred and doctor-fearing heart back together because, yes, I am sick. 

For some, being told you’re sick can be difficult, but to me it made me feel believed. And after all the tears and doctors I’ve been through, it made me feel oh so relieved. 

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woman in restaurant looking out window

Why It’s Hard to Make New Friends When You’re Chronically Ill

My husband and I recently graduated from college and moved to a new town for work. It has been about six months, but we’re still struggling to make friends. I don’t get out of the house much, and after work and making dinner, all I want to do is soak in an Epsom salt bath and then crawl into bed with a good book. My husband will go out with some guy friends to watch sports every once in a while, but if I’m having a flare, he knows I will need him home to make sure I’m alright.

I’m an introvert and I usually don’t mind spending long periods of time alone with my thoughts, but lately I have been terribly lonely. I wish I had someone who wouldn’t mind stopping by to watch Netflix, bring dinner when I’m too tired to cook or just chat.

When that’s your idea of a friend, it can be really difficult, if not impossible, to find someone who thinks of friendship the same way. First of all, where do you find friends like that? Most of the articles I’ve read online tell me that making friends as an adult is like dating — you have to “put yourself out there.” These articles suggest going to events you enjoy, joining clubs in order to find others with similar interests or just hanging out at a bar.

Well, when the “events” I enjoy consist of long warm baths, naps and ordering takeout (or sending my husband to pick it up), how am I supposed to meet anyone?

I do attend an aqua therapy class once a week for those with arthritis or fibromyalgia, but I am the youngest by approximately 40 to 45 years. I also attend a chronic pain support group once a month and I find it very helpful, but again, I am the youngest. And maybe it sounds selfish, but I would like to have some friends who don’t have a chronic illness — people I could call if I needed help with something or someone to hang out with when I can’t leave the house.

In an effort to be more optimistic about my chronic illness (one of my resolutions for 2017), let’s imagine that I have actually found a suitable place to meet potential friends, a place where 20-somethings hang out that isn’t too loud, too overly stimulating and doesn’t drain my energy in the first five minutes after walking through the door. Then what?

Suppose I strike up a conversation with someone and we end up talking for a while, asking each other questions and comparing interests. At the end of the conversation when they suggest hanging out later in the week, should I just say yes and hope they aren’t thinking of some extravagant activity that will leave me in bed for three days? When should I mention my chronic illness, my penchant for quiet evenings at home and my tendency to cancel plans at the last minute? Should I be up front and risk losing a friend before I’ve even really made a friend in the first place? Should I let the truth come out in its own time and just hope they will like me enough by then to actually stick around?

See my difficulty? There doesn’t seem to be any easy way to make friends without being hurt (emotionally, physically or both) in the process.

I really wish that I could end this story on a successful note, but for now that’s not the case. I still don’t have any friends. I don’t have anyone I can call when I’m feeling horrible and don’t want to be alone, but I want to give my husband a break from being my caretaker. I don’t have anyone I can text when I realize there’s no way I can stand up long enough to make a meal. I don’t have anyone I can trust to see me without my “mask” on, without pretending I’m OK until I make it back home.

And I’m completely unsure of how or where to find them.

This is an ongoing journey for me, and perhaps it is for many of you as well. If you’d like to come along with me as I learn how to make friends while living with my chronic illness, just press the green “follow me” button. Hopefully, we can help each other out.

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Lead photo by Thinkstock Images

girl in wheelchair at beach

When Another Year Passes by With an Incurable Illness

Getting teary and emotional at New Year is common and it can be for many different reasons, but the more I think about mine, the more it feels too real and unfortunately that’s the problem. When I hear the words “Happy New Year” around me and the clatter of champagne glasses I smile, join in and chant alongside them. But inside my stomach is doing butterflies as I take a large gulp in to try stop the waterfall of tears just wanting to cry from my eyes. It’s real and it’s here, I can’t stop it, I can’t control it. Just like my debilitating condition.

New Year is hard because it reminds us all it’s another year gone by, and for me I find that incredibly difficult to cope with and accept. In reality, I feel like I can’t cope with it, because if I do then I have to accept that it’s been another year of this illness, another year ahead of the unknown, 365 more days trying to stay alive and praying and hoping for good stability and treatment. If I accept it’s 2017 and a new year, then I have to cope with the fact that it’s another year further away from where I was before I was unwell. It hurts me so bad inside because I feel I’m being dragged further and further away from when there wasn’t a pressing and progressing genetic condition over my every move. I could cope with being unwell, being in hospital a few times a year and on small amounts of medication when I was young — I mean, you keep going, that’s just what you do.

But when it takes over your whole life and nearly takes your life it can become a different story. All my problems were actually all linked to one genetic condition which then was causing all of the complications including the life-threatening ones is something I couldn’t comprehend then and still don’t now. In total over the last three years I have spent 20 months in hospital and in that time (in bites of seven months and two months/weeks at a time) all you have to focus on is staying alive, getting through the next hour and the next day and the hospital is your home, your family and it still is now. Being at home is different, though — you might start the process of grief, because in the hospital you can’t because at the time you’re just trying to survive.

I will always keep going and I will always keep fighting, but I battle with grief every single day, coming to terms with what my life is now, the reality and the seriousness of the illnesses I have. There is no time limit on how long it may take. Some people may come to terms with things very easily, some may take longer. There is no right or wrong. Though most of the time I am so hard on myself to feel I should be stronger, to feel I should be better by now. But I have to remind myself I’m going through this, no one else and no one else can fully understand, even those fighting chronic illnesses, though they do have a lot more understanding about the medical and emotional side, and it’s good being able to have friends to turn to.

It’s tough on not just me, though. It’s hard on everyone around me and the complexity this illness brings with the unpredictability of not knowing what’s round the corner is a hard life to lead. Things can change day to day and minute to minute, plans can often be cancelled and you are constantly on alert whether watching for deterioration of infections to planning surgeries and the next hospital admission. But I think one of hardest things for those closest to me is watching me scream in pain with tears down my face, just willing anything to lighten the load and being so unwell at times with so many tubes coming out it’s hard to even recognize who I am anymore. The want to “fix it” which is something I have witnessed a lot around me, coming out in actions, behavior and emotion. As much it hurts me, it hurts them and all they want to do is take it away and how much I wish that was true.

Coming to terms with a genetic condition you cannot cure and one where at any time any of your organs and systems could start deteriorating to the point of not having any function anymore, which you try to keep stable but in the end have no control over, is something you can only comprehend when faced with.

You go through all the grief processes you would in any other grieving situation, you feel denial: “No, this can’t be happening, no it’s just a mistake, please let it be wrong.”

Then anger and hurt: “It’s not fair, I don’t want this. What did I do to deserve this, is it my fault, who do I blame, how will I cope?”

Then I move on to bargaining, where I will do anything to change the situation, go back to how things were before: “If I make up for every mistake I’ve made will it go away, I’ll try, I’ll do anything, please?”

Then the depression: “I don’t think I’m strong enough for this. This is hopeless, how will I cope, everything’s changed how will I adjust, I can’t.”

Then comes the acceptance. This is when you have learned to accept where you are and have learned to cope in the ways that are best for you. To accept that although it is an extremely difficult situation to be in things will be OK. I will still achieve, I will still make a difference in my lifetime and although so much has changed I can adapt and find my purpose in this world.

There is no right or wrong way to grieve and you can go through all or just a few of these feelings and in any order. In short, you learn to cope but no two ways of coping are the same and no two people are the same. There is not a time clock on which you must come to terms with a life-changing illness. This is something people have said to me in the past and it made me feel I’m not good enough or strong enough as I’m not at acceptance yet. But those who love me remind me I’m going through it, not them and no one else can judge my journey or tell me how I should feel or what I should do. Support is so important and I have that in different ways, but in the end it is my story and until those people who judge me have walked in my shoes for those 20 months in hospital and 12 months to understand just a small bit of what’ve I’ve been through and to know how it feels to fight what I am right now, physically and emotionally. We are all battling our own demons and I would never judge anyone else or comment on their troubles or tell them what they’re doing wrong, so let’s all remember that and have respect for one another. Everyone is facing a battle you don’t know about.

For me, I’m still keeping going, just taking a day at a time, getting the support from those around me and my specialist teams and battling to keep this body the best it can be. Emotionally things are difficult but I will not give up, I couldn’t. I’ve lost too many friends to give up on life. I struggle and I can break down and have days where I just want to hide under my duvet and not come out, but I will never give up. I’m still fighting through the grief and I’m in the midst of it all right now.

I don’t know how long it will take me to come to terms with my reality, but I should not be ashamed of that, nor should I let anyone get me down by those who judge too quickly or act hurtfully towards me. I’m me, this is my story, my journey and it will take me as long as it takes. Those who love me and know me well know that and I know that they respect me for who I am, what’ve I’ve been through, am going through and will keep supporting me through.

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woman covering her eye with her hand

What It Was Like Taking a Shower as a Patient in the Hospital

Since I had been admitted into the hospital I had needed assistance putting on my clothes and most of all taking a shower. After a few days, I could even smell me. You know it’s bad when you start to miss that distinct hospital smell. Lying there unable to move my left side, every daily task was a feat, even trying to put a new blanket on my shivering legs. Never did I imagine this would be my life at 26, two months before my wedding.

The first time that my nurse told me I was going to be taking I shower, my mind was like a Rolodex going through the possibilities of how I was going to do this on my own. As it turned out she was there to help me. They make those bathrooms really big for a reason, I was finding out. I had to sit on a chair because I couldn’t stand up by myself and for safety reasons, everyone there was really big on safety. I was very self-conscious just sitting there naked. I could only wash one side of me due to the fact that my left side wasn’t working. She left me so that I could have a bit of privacy and be alone with my thoughts. Over time, this would be where I would allow myself to become vulnerable and show my emotions. I would have my moment to myself to cry for five minutes each day and let out all of my pain, fear, and frustration for what was happening to me. I would just let the water run down my face and with each time the running water would hit my eyelids, cheekbones, and lips, I would hope that it would move my eyelid back to its rightful spot and loosen the left side of my lips so that it would move again and I could eat a McDonalds Happy Meal.

After about three days of doing this, I could manage to stand by myself with supervision. I would also need someone to help me shampoo my hair. Trying to squeeze the liquid out of the bottle one-handed was tricky. After a while, I got pretty good at washing my hair and face one-handed. I would do this when I was on the neurology floor at a larger hospital I had been shipped to for more tests and then back at the local hospital in my town. I would flip an empty garbage can upside down so that I could put my hair and face supplies on a flat surface while sitting in the shower chair and then would be able to squeeze the liquid on my face or head with no assistance. It let me continue to be independent, which I longed for.

It wasn’t until I returned to the original rural hospital I was at that a turning point happened for me. I lost dignity and never felt more of being “on display” for everyone to see in my life. It was a Saturday morning and I was transitioning into the therapy program where I would have sessions for at least four hours each day. I had a schedule that I had to go by. Up by 7:30 a.m. for my medication and breakfast and therapy sessions starting at 9 a.m. each morning. There was a whiteboard in my room that broke down each of my appointments so I knew what was happening each day and when.

That Saturday morning I saw that I had an occupational therapy (OT) appointment at 9:30 a.m. My nurse and I discussed a plan for showering. She was so kind and made me feel like a person. I told her what I had been doing, that I use both the chair and railing, but I can stand, too. I like to shower by myself, though. For me being a 26-year-old engaged female, this was a big step, as I think it would be for any person losing their independence, which is extremely disappointing and mentally exhausting. She trusted me. She talked to me like a person. We shared jokes and she wasn’t afraid to be blunt with me if need be.

So that morning I started my routine. I got up an hour before my session started, just enough time to shower and get dressed. I remember this was the first morning I put my sweatpants and sweater on by myself. I was smiling from ear to ear. I had never been prouder of myself, almost in tears because of this great accomplishment. It might not have seemed like much to some but to me, it was like I had climbed Mount Everest. Never mind that it took me 20 minutes to dress myself alone, not to mention brush my teeth and make my bed. I was ready for a nap. Every movement was exhausting. It was the fact that I did it myself without the help of someone telling me, “OK, one foot in and now the next foot.” I was taking back my independence, slowly but surely.

However, to my surprise, my dignity was about to be ripped away again. I felt like that accomplishment that I worked so hard for, pulling and tugging trying to find the opening of the sweater, was all for nothing. An OT assistant walked in and introduced herself, saying that the supervising OT on my case instructed her to have me shower in the makeshift apartment they have on the floor. The apartment was used to safely teach people how to get in and out of a bathtub, learn how to cook again using utensils and apparatuses and also safely shower with rails. I told her that I was going to shower after we had our session because I thought we were going to work on my non-working hand. I also told her that I can and have been showering by myself. I use the chair in my bathroom. She said that these were her instructions.

Clearly upset by this, I wondered if I could use my own bathroom, something I would be familiar with and not have to leave my room. She said I had to use the apartment’s shower and if I did not want to complete the session and the task I didn’t have to if I was uncomfortable. I didn’t know what to do. No one had done this before. I thought that this is the process and to get better I have to follow it. I had to trust the process to get better, but didn’t know why the OT didn’t assess my abilities first to see what I could do. Holding back my tears, I wheeled my walker with her down the hall to the apartment’s shower. I looked down the entire time not making eye contact with anyone.

I know that she was just doing her job, but why wasn’t she listening to me or at least get the supervising OT to properly assess me to see my progress and abilities? I felt violated, dirty, even more ashamed. She had to watch me undress and then shower, peeking behind the curtain the whole time, like I had committed a crime. I was so self-conscious. I know this is her job and she is professional, but all that I could think of was that is she judging me looking at my hairy armpits (shaving only one armpit makes no sense) or my purple feet. We made small talk until it was over. I was 26 years old. I feel like at any age this isn’t easy, but there was no second thought as to procedure over compassion or patient care over policy. Doing this assessment in my own room and shower, where I would be showering for the next five weeks, would have made no difference.

Over the progression of the next few weeks, I learned to let things go about being self-conscious about my body. I would be getting dressed and the nurse practitioner would walk in, not seeming to care if I told her to please give me a minute. I know everyone meant well, but respecting privacy and giving people the dignity they deserve goes a long way. The “shower incident” was traumatizing for me, partly because I was hypersensitive and also because I felt I had made a lot of progress to get to the point to be able to get dressed by myself and also shower by myself. Being watched and not trusted to shower again brought me back to a dark place of self-doubt and defeat about my illness. I needed that time in the morning to power through to get in the mindset, to hear myself say, “Katie you can do this, Katie you are strong, Katie you can beat this.” If I didn’t allow myself this time to cry and let out my emotions for five minutes each day then I couldn’t focus on what I needed to do and that was to work on getting better. There was more of a mental component to get through being in the hospital than I ever expected.

Healthcare workers have important jobs that impact patients for the rest of their lives. Their actions and how they present procedures determine how someone mentally can push through their recovery. If you can do anything at all, let patients have as much dignity as possible, whatever that may be. Being naked in front of people you don’t know wasn’t something I had on the top of my bucket list. We rely on your expertise to get through this traumatic experience. Ultimately, this moment will stay with me for the rest of my life. I showered with the door locked for months and continue to do so, in fear that someone is listening in on the other side or wanting to burst in at any moment. I relied on my health care team to make it through my experience; to survive. Showering is a sacred and private act for an individual.

I know that safety concerns and hygiene are a part of any healthcare workers job as well as a big concern for hospitals. I also understood that I had to show a therapist that I was not struggling and they needed to see it for their own eyes. Providing patients with more comfortable settings, like their own bathroom to complete these intimate tasks gives them more dignity and compassion care when they are feeling lost and emotionally overloaded from a diagnosis. Just listening to a patient’s concern over why this must be done, not questioning but educating the importance of the procedure ensures that they feel supported and not blamed or shamed.

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Celebration with nearest friends.

The Lesson I Learned After Party Planning With a Chronic Illness

Last night Nick and I hosted a Murder Mystery Dinner Party for eight. We cooked and served a three-course dinner, transformed our room into a tropical island paradise and entered our character roles with great homemade costumes. Normally, this morning – the morning after – I would be feeling very sick and would have to stay in bed for at least the rest of the day. This morning was different. OK, I had a terrible night’s sleep, but that’s pretty normal, and I’m feeling exhausted (but pleasantly so), but there was one difference.

I let go.

I would normally have made all of the food and drinks myself, cleaned the house from top to bottom, and scoured the earth for the correct costume. Having had a good think about the potential consequences after the party and just before Christmas and the impact it would have, I made some challenging changes to my behavior. I asked for help. It wasn’t easy, I like to think I can do everything; I like to think I know my limits. Rationally I know I can’t do everything and that I never stop at my limits and consequently make myself feel worse mentally and physically.

We asked each couple to bring something. We prepared easy one-pot meals the day before. We chose costumes that were easy to put together and wear. The decorating became a fun morning. I actually bought and threw away disposable plates and glasses (not happy about that bit but it was convenient and saved work the next day).

A close friend, one of the guests, has just been diagnosed with a chronic illness and after a chat on the phone I realized the party was about a group of friends getting together to have fun, not to check out my housekeeping skills. So I did a quick tidy and left the rest. Guess what? I didn’t worry about it and had a great evening! I think I’ve learned a valuable lesson.

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Thinkstock photo by g-stockstudio

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