28 unexpected emotional symptoms of chronic illness

28 Unexpected Emotional Symptoms of Chronic Illness

When you are diagnosed with a chronic illness, the doctor might give you an overview of the common symptoms associated with your illness, but often these are physical manifestations – pain, fatigue, swelling, even brain fog. Many of us are then surprised by all of the emotional side effects that accompany our illness. For me, the many years I spent being very ill but undiagnosed triggered the onset of depression and anxiety. I felt alone, scared, and judged by my friends at school who didn’t understand why I sat out during P.E. every day.

Even though many of us experience a significant change in our mental and emotional state after developing a chronic illness, we’re not always given the same run-down of potential emotional side effects as we are physical ones. Doctors may prescribe various medications to treat bodily symptoms, but what about our thoughts, our feelings, our relationships, our identities? In order to get a better understanding of how chronic illness can affect a person as a whole, we asked our community to share the emotional symptoms or side effects of illness that surprised them.

Here’s what the community told us:

1. “The guilt. I feel guilty for being sick. I have no control over it, it’s not my fault, and yet it crushes me. My illness affects everyone around me.”

2. “The constant merry-go-round of feelings, going between acceptance, depression and anger. Accepting there will be always days when you just wake up sad or angry about it all.”

3. “Grief. You feel an immense sense of loss for your old self and all your previous capabilities. It feels like you have had your life robbed from you, so you essentially go into a state of mourning.”

4. “Grumpiness! I used to pride myself on emotional awareness and self-control, but lately I find myself irritable and snappy. It happens when I’m in a lot of pain or discomfort, and when I’m having sensory sensitivity issues. I’m learning to see it coming before I snap at someone I love.”

5. “Shock. Everything happened so fast that I didn’t have much time to process what was happening to me. I came to terms with my mortality.”

6. “I developed PTSD from medical trauma. It surprised me because I didn’t realize I could get PTSD from what I went through, but I was diagnosed with it after years of going through so much medically.”

7. “I had relentless, overwhelming despair for over two years as a physiological side effect of my chronic pain/illness. I felt it in my entire body. I had no idea I could feel that way.”

8. “I never expected the level of empathy I now feel. The me before took for granted what health is, but now I know better and I am able to relate so much better to my peers.”

9. “Ableism and the lack of accessibility and support from society as well as the fact that society values achievement and productivity so much can lead to feeling worthless.”

10. “The constant use of humor or sarcasm to get through the day. If I point out that I messed up my words, got lost somewhere or forgot where I was going, it’s so much easier to laugh at myself than show how silly it makes me feel or how scared I get. I’m always ‘on’ and ready to joke, even though I’m exhausted from faking my way through 75 percent of the day.”

11. “When I was first put on the diet I am on now, which is low-starch and low-sugar, it surprised me that I felt the need to grieve for the food I couldn’t eat. I still get upset about not being able to eat a lot of food, even little things like toast. Sometimes it’s all I can do not to cry because I miss food so much.”

12. “The intense feeling of isolation. The people closest to me didn’t understand what I was going through, and after a while didn’t care because I was ‘always sick.’ So I stopped talking about my illness, about my feelings. The time I needed support the most, I found myself almost completely alone. That was a very difficult emotional blow.”

13. “Shame. I know I shouldn’t feel ashamed about my illness, but sometimes I do feel shame about my illness causing me to miss out on events with my friends.”

14. “For me, it was feeling numb towards everything. When I realized I won’t have my ‘old life’ back, I went completely numb to everything for a while — no emotion whatsoever.”

15. “Dissociation. I often don’t acknowledge my body as mine. When describing issues I say “the body” or “the stomach.” I personify them sometimes too. It’s a way of coping that makes it feel like the issue is not mine to own. I have started to accept and use possessive phrases, but off-hand I still dissociate from my issues.”

16. “The constant, unrelenting feeling of fatigue. It’s gotten worse over the years since being sick… Everything takes so much out of me… Some days I get a boost of energy out of nowhere. On those days I try my best to do everything I need to do and I rush through them, hoping my body will last through it long enough to get tasks done before I lose all my strength again. Still, it never gets easier trying to find peace with it all.”

17. “Anxiety. Anxiety over when my next episode is going to hit. Anxiety over dealing with welfare and trying to get them to understand my conditions. Anxiety over going down the street or being on my own for more than an hour. What if I have an episode and collapse? What if my heart finally gives out because of the stress being in this much pain has put on me? The anxiety of going somewhere and not knowing if they’ll have food I can eat or the right type of chair for me to sit on that won’t bring on an attack of pain.”

18. “Helplessness. I have all these ideas and tasks I want to accomplish and my body just won’t let me do all the things I want and need to do.”

19. “The development of an eating disorder (not so uncommon, but there was no information, advocates or professionals who put the warning of the link out there).”

20. “Denial. I was diagnosed at 14 and really didn’t understand what juvenile rheumatoid arthritis was. I thought if I ignored it, it wouldn’t be real. I just wanted to be ‘normal’ like all the other teenage girls at school. Obviously that plan didn’t work but it wasn’t until my junior year of college that I really participated in my treatment and started advocating for myself and others.”

21. “Anger. I didn’t know I could hold so much anger within myself. At myself. At people who don’t understand. At pharmaceutical and insurance companies. People I don’t know. Anger toward people who take their health for granted. Anger every time someone complains about being sick when they have nothing more than a cold. Anger that I will never be who I once was. Anger that there aren’t usually answers for people with chronic illness. Anger that I am starting to forget what life was like when I wasn’t sick. Anger that I miss out on so much and when I don’t miss out I can’t soak anything in or remember it because I have to fight my way through everything. Anger that it is so unfair, and there’s nothing I can do about it.”

22. “Feeling sorry for myself. You work through your illness for so long. You put on the brave face day in and day out. Maintain a composure of control and strength. It’s no wonder no one understands how you can be sick. It feels like weakness to feel bad for yourself but this is your life now. This is who you are.”

23. “Self-doubt. My whole life I have been treated as if I am lazy when I have always given 110 percent.”

24. “Bitterness and jealousy of healthy people who have never had to experience the same problems or who get to enjoy things I never will again. You don’t realize how much you take for granted every day until those things are slowly taken from you.”

25. “Fear. I am afraid of what my future may hold. I don’t want to live the rest of my life in pain, trying to ration out pain medication. I fear for my children and grandchildren that I may have passed down ‘faulty’ genes to them and that someday they may get sick like me. I fear I will become too much of a burden on my loved ones one day. I fear so many things.”

26. “Denial gets me every time. In my head I’m still healthy and active, until I try to be healthy and active. It doesn’t matter how long I go through this same circular pattern…it’s always I think I can, I think I can, then #fail.”

27. “The constant panic really blindsided me. ‘Is this pain in my arm going to be something else that needs treatment?’ ‘Can I get through the whole party?’ ‘Can I eat anything there?’ ‘Will I even have energy left to go out on the street after getting ready?'”

28. “My capacity for compassion has grown immensely. It’s hard to judge another person when you know how much can be hidden behind the facade.”


missing piece in a jigsaw puzzle

The 'Chronic Conundrum' of Having a Sudden Change in Symptoms

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing?

It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from you!

Chronic and complex illness is so often like that. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team tries to put the pieces of the puzzle together.

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made and followed with great anticipation that symptoms may reduce, even if a cure is out of reach.

A feeling of hope returns as you feel you are in the driver’s seat navigating the road ahead. Nothing can stop you now.

Nothing except a missing piece of the puzzle.

A chronic conundrum. A change in symptoms, a new symptom, a worsening of symptoms. A knowing feeling that something is not right. Your stomach turns just a little. Just like finishing that jigsaw puzzle only to find a missing piece.

Living with chronic disease is often referred to as “the gift that keeps on giving.” Labeling it a gift is a stretch at best but it definitely will keep you on your toes.

I have a worsening of symptoms and new symptoms. My conundrum is: Do I “watch and wait?” Do I make an appointment to see my GP? Do I go to the ER?

It’s a chronic conundrum faced by so many in the chronic illness community. It’s something we dread. We want to keep things moving on an even keel.

We don’t want to face conundrums, neither do we want to be a conundrum to our doctors or our family and friends. We would love to focus on something other than our chronic health but when it’s all encompassing and ever-giving, we can’t escape.

The reality is we will often be in this position so we need to find ways to cope.

I don’t have all the answers; in fact I often don’t have any answers, but I do like to problem solve and find a way forward.

A way out of my chronic conundrum restores peace and hope.

So I have made a plan and taken action to deal with this latest puzzle:

1. Stay calm. I’m doing this by writing and planning. Works for me!

2. Make an appointment with my GP. Make notes for my orthopedic surgeon.

3. Get organized with x-rays and notes for my physiotherapist.

4. Don’t change anything in my current treatment plan until I’ve spoken to my GP.

5. Rest and prioritize all necessary tasks.

6. Watch and wait with some of the new symptoms that require assessing. Discuss referral options to new specialists if needed with my GP.

7. Most importantly… Go and do something relaxing knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Until the next chronic conundrum, of course.

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Thinkstock photo via BrianAJackson.

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My Fears as Someone With a Progressive Illness

Life with a progressive and fatal illness can be hard.

The day-to-day can get marred with a great big “this will get worse” cloud.
Thinking of the future can be terrifying. You pray you’re still going to be well enough to enjoy what most people take for granted when looking into the future.

It can be scary and isolating, not wanting to upset loved ones with your fears for your future. There are far more emotional impacts than physical at times.

People say to focus on the here and now – one day, one week at a time – but that spoils the joy of being a mother or father at times, as part of the joy is looking forward to weddings and grandchildren.

It also makes you feel scared for your partner – how will they cope when your condition gets worse, or when you die? You worry they think you’re a burden now, so what happens when your illness progresses?

All these thoughts can greatly impact our emotional state and can make us moody, tearful and depressed at a time when the world is saying, “Enjoy the moment, make the most out of life, every day counts.”

Which it does and you do, but still this cloud follows you and whispers in your ear all the things you don’t want to be thinking .

With thinking of the future comes the fear that your illness is bad enough already – what will I be like when it gets worse?

It’s slow and painful, but I try and forget about it and be positive. I am determined to enjoy my time despite of this.

Although I want to live in the here and now, stay positive, make every moment count…this can also add extreme pressure because I know I should and I feel like the world would think better of me if I did.

I would love for people to remember me as a fighter – someone who never gave up, made every second count and stayed upbeat and optimistic to the end. But what if I can’t do that? What if I’m not brave and don’t make every moment count?

The only thing we can do in life (or death) is be ourselves. Dealing with a progressive illness is bloody hard and scary. But I try to console myself with the fact that many people with a progressive illness probably feel the same.

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Thinkstock photo via tixti.

watercolor of a woman with long hair

From the Old Into the New: Embracing My Life With Chronic Illness

Quite an interesting title, I understand; however, as I pondered this writing for quite some time I couldn’t help but feel a welling up within me to share a piece of my journey that only those deep within my circle are aware of.

As a disabled, chronically ill person with multiple illnesses, why would we consider this life a “new” one? How could this even be possible? Far too often I read stories, social media posts, blogs and the like of people who are often stuck in the life that once was. The pondering thoughts of the career that can no longer be fulfilled, the family that doesn’t understand and support them, the friends that have turned their backs on them, the social events that are but a memory long gone…and my heart aches at the pain and sorrow that appears to be all-consuming.

I am often criticized for my optimistic approach to this chronically ill journey – at times, written about in the keenest of ways through poetry and prose. I do not let this sway me, however, for the reasons I am about to disclose. This is a very private part of my journey I hope will encourage change in your perspective on your own path.

In the beginning stages of my now many diagnoses, my family lost four family members to chronic illness within a few short years. In 2011, I lost my Aunt D, who was more of a mother figure to me and was the most difficult for me, personally, to go through. Following her passing I fell into a deep depression and wound up with an anxiety disorder in the same year. That was also the year I presented a seizure disorder which we now know is linked to one of my incurable illnesses called gastroparesis. Soon after, my mother’s father would pass away. My Aunt M, within the same family, passed suddenly due to complications from lupus and other illnesses and then my mother’s mother passed at the end stages of Alzheimer’s. Our family had experienced so much grief in such a short amount of time we wondered how we would recover from it. We couldn’t even hold a service for my grandmother because it was too unbearable for us all.

I went through talk therapy and medication management to work through my diagnoses, pulling from my coaching certification and one thing my aunt who had passed away in 2011 and I had made a pact about. This is the piece I’d like to bring out. She was always a bright and shining light in my life. Even during her chemo treatments. No matter how sick, no matter how bad the pain, she loved relentlessly and unconditionally. She made me promise that no matter what, I would not allow any illness to define me. She knew me. I was a fighter. I have always been a fighter. I was always positive and optimistic. I suppose I was born that way. I think it annoys people sometimes but I like to think it helps more than hinders. No matter, she made me promise to help as many people as I could with the gift of love and positivity. To be a light to others. To show them that in the midst of any storm they too could make it through if they had someone to encourage them and a hand to hold. And so I do. This has always been me.

Why “From the Old Into the New?” Because I’m not that person anymore. I’m not well. No, I’m not. I can’t do the things I once could but that’s OK! What I can do is something new! I’m a patient advocate, I’m a “teacher” regarding what I’ve tried as far as treatment plans and medications and I present that back to others (I am actually a former teacher so this ebbed and flowed quite nicely into my new path). I’m a coach and I encourage, love and lift others up. I’m a philanthropist and I give back with a team of other beautiful women who share the same heart as I do. I’m a mom of a child with autism and I advocate for him as well. I’m a lover of all people and I do not judge. That is not for me to do. I’m a lifelong learner of new things and I educate as much as I can. I appreciate balance on a whole new level and listen to my body and take more time for me instead of pouring every bit of it into the corporate world. More so, I have made new relationships that are true and matter, as opposed to false or pretentious ones where people are only there when it’s convenient for them. Is the “new” challenging? Yes! Is the “new” difficult? Sure! But is the “new” a little bit more real and fulfilling with more wonderful moments than the old? For me, I would say so!

I hope this encourages anyone who is still mourning the old life. The new one holds more than you think. You just have to look for it and have some support people in place to help you when you need it. Give yourself grace too. Sometimes it’s OK just to be OK.

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Medical woman comforts young female adult as she stands with her back against to the wall in a hospital corridor. Head in her hand she looks very upset.

10 Survival Tips for Dealing With Chronic Illness Distress

Chronic illness is stressful. As an advocacy organization that works directly with patients, Good Days regularly assists individuals who not only need financial resources to cope, but require emotional support, too. We asked our patient care specialists and the Good Days’ community of friends who have personally dealt with chronic illness to share their survival tips for dealing with distress. Here is what they had to say:

1. “Remember that attitude has a lot to do with it. Attitude, genes, prayer and medicine.” – Anton T.

2. “Write down your thoughts, dreams and ideas.” – Samantha C.

3. “With chronic illness, everything you take for granted in your life can feel as though it is falling apart. To make the best of your situation, you cannot give up. You must own your experience with your doctors.” – Brenda H.

4. “Take 30 minute daily walks.” – Sabrina T.

5. “Attending church services or non-denomination spiritual services can be very therapeutic.” – Sabrina T.

6. “Stay positive. You have too much to do.” – Anton T.

7. “People are often too proud to ask for help. It isn’t easy. Remember that there are guides and resources that can assist you. They don’t want to take your pride away, they want to help.” – Brenda H.

8. “Hope keeps you going and it’s so important.” – Kim W.

9. “Embrace your faith. It’s OK to say lots of prayers for yourself and others.” – Nancy O.

10. “Sometimes the hardest thing is knowing you are that person or family. But keep fighting and you will find some absolute lifesavers along the way.” – Hanna B.

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two women sitting outside and talking

The Anxiety I Feel When People Ask, 'So, What Do You Do?'

I truly dread meeting new people. Small talk and idle chit-chat usually lead to being asked anxiety-producing questions like “So, what do you do? Where do you work? Are you working full-time?” Where is a trap door when you need one?!

I never ask anyone these questions because I don’t want anyone to ask me these questions, because I don’t have an answer – well, not a good one anyway. Since I was 15 years old, I’ve always had at least one job. I haven’t had steady work for about six years now and I really don’t like to talk about it all that much. As a person living with chronic illness (that sometimes needs a two-hour nap after a trip to the grocery store), I just don’t have the stamina for a job or the conversation.

When I meet someone new that asks me about my work, I usually say something like, “I’m between gigs right now.” If they press for details, I start stammering a long and turbulent story of my work history (a.k.a. my resume) in a desperate attempt to let them know there is nothing “wrong” with me – I am employable! I usually leave my medical resume out of my ramblings. I’m not sure, but I bet there is probably some Emily Post rule out there somewhere about the timing of introducing the topics of brain surgery and bowel habits into a conversation with someone you’ve just met.

It’s when we part ways that I beat myself up, wonder why I said all the dumb things I said. I get caught up in comparing myself to others, thinking I’m not good enough or worthy of their time because I am not gainfully employed. I find myself projecting what they may be thinking: Are they judging me because I do not have an employer? Do they think I’m lazy? If only I tried harder? Am I too picky? I berate myself for not having a job; if I had a job, I’d have an acceptable answer. Over-thinking: 1, Kelly: 0.

I’ve tried making my employment status into a joke by giving clever yet evasive replies. After a few chuckles from the crowd, I somehow end up apologizing for being flip and go back to my old spluttering script. Here are a few of the responses I have tried:

Self-unemployed: One time someone responded, “Oh, an entrepreneur, how exciting!” I’m not sure if they missed my joke or if they were playing along and I missed their joke.

Domestic Goddess: I stole this one from Roseanne Barr. Usually makes people laugh but I think most don’t know of its origin. I’ve actually had to explain who she is and it kind of takes the fun out of it.

Alchemist: I can take ordinary water and make the most fabulous soup you have ever tasted. And at Thanksgiving, give me the picked-over turkey carcass and I can feed you for days. Actually, I’m very much like Jesus; water to wine, loaves and fishes? Please!

Professional patient: While true, it does catch people off guard and can make them feel uncomfortable and head for the hills. Essentially it gets me the result I claim I want: to be left alone.

Seriously though, after some much needed self-reflection, I’ve come to realize that yes, I indeedily-do have a job; it’s called taking care of myself. What I don’t have is a paycheck.

The other day, I decided to test this new response out. I was attending a conference and someone asked me one of the million dollar questions, “Do you work full-time?” I calmly answered, “Yes, I work full-time at Taking Care of Myself and waited for her reaction. She didn’t ask for details so I offered none (I thought my head was going to explode!). She just smiled at me and said, “Good for you!” Over-thinking: 0, Kelly: 1.

This post originally appeared on Write Down the Middle.

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