Having a Chronic Illness

Having a Chronic Illness

thoughts, tips, and lessons learned

Handling Relationships and Lifestyle Changes

I think the hardest part of having a chronic illness for a lot of people, is dealing with the fact they can hardly recognize the life they are now leading. Because of this having a chronic illness takes a huge emotional toll in addition to a physical toll. For me, some of the things I loved most, are now (on a typical day) impossible for me. In my experience, this aspect is worse than the actual physical symptoms. I used to go hiking weekly, volunteer hours each week, hang out with my friends, and keep a clean, tidy home. My career was going just as I had hoped it would and I loved my classes (in college) and my job after graduating. Now, all of that is not possible for me. I am unable to travel to visit friends, have to cancel plans last minute, cannot do much other than talk with friends, and am sometimes unable to attend family functions. It is pretty obvious this is very trying to myself, but it is also extremely trying on my relationships.

As they say… every cloud has a silver lining. I have new hobbies such as painting and have a lot of time to read. I have found it has made many of my relationships stronger than before. I can’t do many activities, so friends who I can’t just have fun with by talking and watching a movie have kind of fallen away. This has shown me who my friends for life truly are. Nothing has made me see how important family is more than being sick. My parents are willing to drive an hour to pick me up, drive me two hours to the doctor, two hours back, and and then another hour back to their house. My mom comes and cooks for me and cleans the kitchen. My soon to my mother-in-law does our laundry and will drive me whenever I need it. My fiance does more than I can ever list; he is my rock. He helps out around the apartment, runs errands for me, drive me all over the place, and offers a shoulder to cry on. Everyone is always telling me to rest — I’m not very good at that. I am used to have tons of energy, so I find it difficult to listen to my body.

My Top 10 Dos and Don’ts

1) Do let others know when you aren’t feeling well

It doesn’t help anyone when I keep it a secret that I am feeling sick. I used to try and tough it out. Actually, I took pride in people not knowing I had an illness. Even with measurable symptoms such as huge lymph nodes and fevers, I would think to myself that I was being weak and push myself to work, go out, exercise, or clean. Looking back at all of the times I made myself more sick trying to do “normal” things, I can see how ridiculous this was. My family and friends like to know when I am feeling sick so they can give me a place to lay down or help out. I am sick, so letting other knows helps them know I need their help and helps me not over-do it.

2) Don’t let your illness define you

Whether it is your job, hobby, or illness, when you are experiencing anything everyday, it will come to be something people think of when they think of you. This cannot be changed, but this doesn’t mean you have to let your illness define you. You are much more than an illness. It has become a major part of your life and your family and friends will want updates, but this does not mean it has to be the topic of your every conversation. Talk about upcoming events, the news, food, your new found hobby, your family… the topics are endless! You will find talking about topics other than your illness will help you feel more “normal” when you are around people.

3) Do try and do things on your good days

If you are not depressed about no longer being able to do things you used to take for granted, you are in the minority. It is natural to feel as though you are mourning the loss of your life. I know I went through a period where I was very sad I couldn’t work, see friends, or even cook for myself on some days. At first, I would rest all day, even when I was feeling somewhat “good” (as good as it gets with me anyway), because I was afraid of making myself more sick. Or even worse, I’d wake up to a good day and run around doing things like I was on crack. Now, I realize there is something between doing absolutely nothing on a good day, and doing every little thing I’ve been missing. This brings me to my next “don’t”.

4) … but don’t overdo it on your good days

When you wake up and are feeling better than usual, it is so tempting to do all the things you have been wanting to while you can. For most people with a chronic illness, this is a huge mistake because it will result in feeling awful for the following couple of days. One good day is not worth 3 days of feeling absolutely horrible. On resting days, I make a list of things I would like to do and rank them. A lot of the time, it is boring things like laundry, cooking, or cleaning. Sometimes it is something more fun like shopping or doing something with family. On my good day, I get out my list and do the top 2 things. This prevents me from overdoing it and has made me a happier person because I don’t feel as trapped in bed. I know that when I have a good day, I’ll be able to do something I want to.

5) Do educate others about your illness and chronic illness in general

Sometimes, I have thought people I encountered were being insensitive, when in reality, they just need educated about what is like to live every day feeling cruddy. I am a positive person, who usually has a smile on her face,and I usually don’t mention how I am feeling unless someone asks. I think this is the reason some people have trouble understanding just how severe my condition is. My experience is when I educate people (rather than giving them a one sentence explanation) about my illness and the symptoms it causes, they almost always have a complete turn around, or don’t come off as insensitive to begin with. I have found it most effective to find things they have experienced themselves, and compare it to my illness. For example, I feel like I stayed up all night, took a double dose of Benedryl, have strep throat, have stomach flu, and just ran a marathon. These are all things most people have experienced or can relate to and it is easy for them to imagine what it would feel like to have them all at once every day. Another effective way to educate others is to have others read journal articles or watch a video about your illness.

6) Don’t feel guilty for what you cannot do — say “no” to yourself and others

This one is still hard for me. I have been sick going on 5 years, and I have only accepted this fact in the past year or so. I had such a hard time accepting I couldn’t do a lot of the things I wanted to, but I had a harder time not being able to do things other people wanted me to. I was the “yes” girl and made myself extremely sick (almost daily) by not just saying “No, I cannot do that because I am feeling sick” to myself and to others. As a college student, I found it impossible to do this with all of the classes, friends, and fun things to do. At my new job, I found it difficult to do because I had such big dreams for the difference I was going to make in the world. I also was in a new position, so I wanted to have a good reputation and be reliable.

I wish I could keep in touch with friends, keep a clean house, run around all day with my stepdaughter Emma, work, volunteer, and basically be superwoman. The reality is that I am currently disabled and whatever I am able to do is enough. A few months after my job started, I became too sick to hide it anymore. I began telling co-workers about my illness and also began telling extended family members. Every single one of them was understanding and asked how they could help. They also began checking to make sure I wasn’t taking on too much. I now regret all the years I didn’t let the people in my life know how sick I was feeling. I still feel guilty that I can’t do things like I want to, but I also know everyone understands. I have saved myself from getting very sick by letting people know what is too much.

7) Do be prepared

This means something different for everyone and with a chronic illness, the list is virtually endless. Here is a few examples of what it means to me…

  • wherever I am, I need to be able to sit
  • ensuring wherever I am going has air conditioning and I will not be in the heat more than 30 minutes
  • making plans in one hour increments as I can’t do something much longer than that (without a ton of medicine) without laying down
  • asking people to plan on helping me whether it be rides to appointments, running to the store for me, etc…
  • planning to rest 2-3 days before and after any “big” day (an example of a big day would be a family gathering or grocery shopping then cleaning)
  • always taking a print out of a journal article about POTS to the E.R. and any other doctor with me — a lot of nurses and doctors don’t know what POTS is and this is easier than trying to explain — it is also credible
  • I have a standing order for fluids at the hospital for times when my blood volume gets low
  • calling prior going to a new place/home to make sure I can be accommodated both with needing to sit and my food intolerances
8) Don’t give up

I have been wrongly diagnosed so many times. If I hadn’t kept pushing and going to different doctors, I never would have found out what is wrong with me. I have been diagnosed with depression, anxiety, tonsillitis, low hormones, reoccurring epstein-barr virus, and Chronic Fatigue Syndrome. NONE of these were right. If a diagnosis (or lack thereof) doesn’t sound right to you, seek a second opinion. Be prepared for doctors to tell you that you are depressed when they cannot find what is wrong with you. I began carrying a copy of a psychiatric assessment that said I was not depressed, anxious, or experiencing any other mental disorders. This was very effective! I even went to a cardiologist who refused to do a Tilt Table Test on me; the test that ultimately found what is wrong with me, POTS. Someday, when I am a little better, 15+ doctors are getting a letter explaining what was wrong with me all of this time and the signs they all missed (hello 120 resting heart rate!!!).

Even after you are diagnosed with an illness that may never go away, don’t give up. This is easier said than done since doctors usually just treat the symptoms of a chronic illness. If they had the cure, it wouldn’t be a chronic illness; they’d just fix it! Don’t give up because maybe one day a treatment will help with your symptoms. Keep trying medications and therapies.

9) Do give yourself permission to have days where you mope

As I touched on earlier, being sick every day is emotionally exhausting. Some days, you will be so fed up with it that you can’t muster up positive thoughts, and you’ll be too exhausted to do an activity to distract yourself. This is okay! You are allowed to be sad and mourn the loss of the life you once had. If you are lucky enough to have people in your life that understand what you are going through, talk to them on days like this and let them know how you are feeling.

10) Encourage others to do things even if you cannot join

Having a loved one who is sick is exhausting on the people around you too. They spend a lot of time helping you, and wouldn’t change that for anything. However, to continue being a good support, they need to be happy themselves. Making family and friends feel guilty about you staying behind or being unable to do something is not healthy for anyone. I always encourage my fiance, Jake, to go out or do whatever he wants even if I can’t come. It makes me happy to know I am not holding back two people from living their lives and Jake is having a good time!

 

I’d love to hear some of your personal dos and don’ts!

24 thoughts on “Having a Chronic Illness

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  1. thank you so much for sharing your journey. my 22 year old daughter has recently been diagnosed with pots and dysautonomia. her journey is incredibly similar to yours. could you please share the article that you take to the ER.
    sincerely,
    robyn lindh

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  2. OMG you have POTS! I got a half-assed diagnosis of that sort of… My tilt table test showed a heart rate of 140 the second they tilted me, and the tech was like “I don’t know if that looks like POTS to me.” But it meets the diagnostic criteria. lol. Whatever. My heart beats really freaking fast when I stand up sometimes. But I have neuro symptoms too. Glad we’re following each other now!

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    1. It sounds like the people who did your test don’t know much about POTS. It seems like it is definitely a case of POTS if your tilt table test went like that! There is a type of POTS that has a neurological cause (neuropathic POTS). I know one of the common things with people who have a neurological causes for their POTS is that they don’t really sweat. I have hyperadrenic POTS which has a different root, but I also had issues with food due to nausea/vomiting. Food was extremely unappealing and I dropped about 15 pounds. I forced myself to drink soda as much as a could. It was like I was reading about myself when you were saying in your post how you knew intellectually you needed to eat, but your brain also didn’t really want to do it because of the short term.

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  3. I agree with everything you have to say about a chronic illness…excellent outline. I have a very hard time with doing “too much” on good days, and then paying for it the next day. Its like a fine balance and with new symptoms its like learning to walk all over again. Thank you for this post, it reinforces what I already knew, and its helpful to read it from someone else’s point of view.

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  4. This. Is. Amazing. This post should be something everyone with a chronic illness reads. Thank you! I connected with each and every word. I don’t have POTS but I do have chronic fatigue. Although my instinct is it’s something else but I don’t even know where to start as it has been around for years. And maybe it is just that.
    Thank you for writing this! And I’m so glad to have found your blog. Big love. Keep shining. X

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    1. Thank you so much! I’m happy you could connect with it. I’ve found most people with chronic illnesses go through similar emotions and struggles, even if the actual illnesses are completely different. I’m working on some similar pages right now so stayed tuned. 😊

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  5. Hi! I’m 19 and I also have a chronic illness (Marfan Syndrome) and I must say: this is wonderful!! I can agree and relate with every single point you make. I hope this gets read by tons and tons of people!
    Thanks for the awesome post. I love reading these kinds of things and being reminded that the way I’m feeling and thinking really isn’t that out of the norm for people with chronic illnesses. It makes me feel less isolated (not that I’m happy that other people are suffering!!).

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    1. Prior to getting ill, I didn’t think people suffering different illnesses had much in common other than that were all sick. Now I’ve found, regardless of the illness, the emotions and struggles are very similar across the board! I’m so happy you could relate to it and it helped you feel a little less alone. Please feel free to share it with anyone who you think it might help understand you or themselves a little better.

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        1. There are definitely some universal truths when it comes to chronic illness, and knowing them is one blessing that has come from all of this. Thanks for your well wishes, I have high hopes!

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  6. My 38 year old daughter died in January 2013. (Thank you for visiting my blog). Vic was one of the bravest people I know, as is Katie Michele who commented just before I did. Vic’s favorite saying to her boys were “I am your mother not your excuse” I see the same bravery in you. Good luck Jackie. I will follow your blog as I follow Katie’s – with admiration and respect.

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      1. Your story about when you were serving someone at the till is literally the same as mine, in my job i have to stand for long periods of time and just go into a daze most of the time from pre syncope and hate when people take ages to get their change! lol I’m also 23 aswell it felt like you were describing me:) everything you’ve wrote on here has been really helpful.

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  7. can you tell me what your symptoms are with hyperadrenic pots? I was told I have pots but was not told what kind and am wondering if that is what I have. Thanks!

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    1. It really varies person to person with the commonality being norepinephrine surges (AKA “adrenaline surges”) when upright. I get shaky from them.

      Some people with this type of POTS have high blood pressure as a result of the surges, but having high blood pressure or bouts of it does not mean someone has this kind. However, it is an indication for it to be looked at. Despite my norepinephrine increasing five-fold when standing compared to supine, I actually have orthostatic hypotension.

      There is a very specific way to test for this. It should not be tested via a urine collection. I wrote about the testing in another post and in the post, I linked some articles about hyperadrenergic POTS you may find helpful. https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/

      Best of luck!

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  8. Thank you for your reply. I’ll check out those links. I go through phases where I get intense surges that feel like adrenaline and it makes me feel really hot and like I have to lay down. The same kind of feeling, but many, many times more, of when you think of something exciting and are looking forward to it. I get bouts of really low blood pressure and sometimes elevated blood pressure. Would my cardiologist be the one to do this test or is it another kind of doctor? Thank you again.

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    1. It is possible for any doctor to do this test, but because of how specific the way it needs done is (which I outline in the post), I have mostly only heard of people getting it done at autonomic centers. It is worth asking! Many doctors are willing to learn.

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  9. Hi! I’m 16 and I was recently diagnosed with POTS. I’d been having the symptoms for over two years before I was diagnosed, and I was constantly depressed and anxious about my illness and about all of the false diagnosis’s. At first they thought I had acid reflux! Reading these tips were really helpful for me, I take pride in acting like I’m feeling ok, but my friends have all told me that they would like it better if I told them how I really feel. Thanks for the tips, I think anyone dealing with a chronic illness should read them! I love your website, it makes me feel like I am not the only one dealing with this illness 🙂

    Liked by 1 person

    1. Thank you for taking the time to let me know my site helped you! It means more to me than you can probably imagine.

      A larger percentage of people who have a young age of onset of POTS get better compared to those with a later age of onset. I hope you are able to find some doctors you trust and are among the group of people who regain most of their quality of life!

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  10. Has anyone ever connected gluten intolerance or celiac to POTS? Have any of you cut out gluten from your diet and if so, were there any improvements on the POTS symptoms? Thanks!!

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    1. I don’t know that it is connected, but it is a common co-occurrence. Celiac effects many people without POTS, and gluten intolerance even more, so it’s hard to say if it is all related or just a common issue in the general population. Celiac is autoimmune and certain autoimmune diseases can cause POTS, however, like I said, I don’t know if it has been found to be linked to Celiac. A Google search may help you find more info and others with the co-occurring conditions.

      Celiac runs in my family. I cut it out prior to testing which makes the antibody testing to it inaccurate, but I felt so much less bloated that I knew I’d never add it back, celiac or not.

      Anything I can do to make any part of my body feel better tends to make me feel better overall as it is one less thing for my body to cope with, however diet has never helped me with my autonomic symptoms. I can’t speak for others.

      If you use the search bar on my blog and search for low FODMAPs and Food Baby (lol) you’ll find info on my GI issues. Gastroparesis may be a helpful keyword too. Food Baby posts were written before I discovered low FODMAPs.

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