Beyond Exhaustion: How Life Changes with Fatigue

2 min read

Fatigue: It’s not "just being tired," and it's an experience that individuals living with a chronic health condition like Crohn's and ulcerative colitis know all too well. Fatigue can impact every aspect of daily life, whether the fatigue is a symptom of another health condition, a side effect of treatment, or a medical issue of its own. To better understand the true impacts of fatigue, we asked more than 2,500 people living with chronic health conditions to share their experiences.

What does fatigue really look like?

Fatigue plays a big role in life with a chronic health condition, whether a person is dealing with migraine, COPD, endometriosis, or cancer. Across different health conditions, fatigue is a common experience. In fact, nearly all patients have experienced fatigue over the past week. But what’s causing that fatigue? 6 in 10 survey takers faulted their current health condition(s), while 5 in 10 said that unrestful sleep or pain contributes to or causes their fatigue.

Fatigue can cause low motivation 73%, joint pain 68%, sore or aching muscles 65%, trouble concentrating 62%.

Fatigue can take an emotional toll

Many of our community members have been dealing with the impacts of fatigue for many years. In fact, 24 percent have been coping with fatigue for 2-5 years, and 48 percent have been dealing with fatigue for 5 years or more. 4 in 10 say that their fatigue has gotten worse over time.

Over one third say fatigue interferes with their outlook on life. Fatigue interferes with carrying out certain duties and responsibilities 55%, physical functioning 54%, and work, family, or social life 54%.

False assumptions about life with fatigue

For many, questions like "Oh, you’re just tired?" and statements like "Well, I’m tired too" can be the most frustrating aspects of coping with fatigue. For people who don't live with chronic health conditions, it's easy to downplay or misinterpret the true impact of fatigue. As a result, many of our survey takers are faced with false assumptions about fatigue, making it that much harder when fatigue strikes.

86% have heard misconceptions about fatigue. Over half have heard people say you just need to sleep to treat fatigue or you can power through fatigue or you should go about your normal activities, even when tired.

Feeling comfortable talking about fatigue

Fatgue is difficult to explain and control

Even though fatigue can complicate so many aspects of life, it's also incredibly difficult to control. While community members have tried a wide range of prescription and over-the-counter medications, alternative therapies, and lifestyle changes to improve sleep and reduce fatigue, only 7 percent feel like their fatigue is well-managed.

45% only discuss their fatigue with people they trust, 28% only discuss their fatigue when they absolutely need to, 21% do not discuss fatigue, 6% tell most people

It's important to feel heard and understood

So, why is it so difficult to control fatigue? According to our community members, it may come down to the patient-healthcare provider relationship. When asked about speaking to their healthcare provider (HCP), our community members identified some gaps. Sadly, many patients feel like their healthcare provider (HCP) isn't regularly discussing or addressing their fatigue, with only 20 percent* saying that their doctor works with them to develop a treatment plan that effectively manages fatigue. And, only 32 percent* say that they are in agreement with their doctor about the level of fatigue they experience. If patients can’t talk to their doctors about fatigue, what's it like to try to talk to family members, friends, and coworkers who don't have fatigue?

*Top 2 box on 7-point scale

20% have treatment plan with doctor, 32% are in agreement with their doctor about their fatigue

Remember you are not alone

While there's no denying that fatigue changes so much of daily life, it can be helpful to know that you are not alone. No matter what chronic health condition (or conditions) you face, there are many other community members who understand that fatigue goes beyond exhaustion.

Tell us more about what your life looks like while managing fatigue. You can comment below or join the conversation in our Forums.

The 2020 Fatigue & Health Survey was conducted online from March through May of 2020.

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paul1701a Member
Thank you for posting this article on fatigue. I have struggled with fatigue for years and never talked to my doctor about it. Consequently I have no treatment plan for it. I have an appointment with him today and I’m going to talk with him about it. I was hospitalized a month ago with a partial bowel obstruction for 5 days. Thank God I escaped the need for surgery. I’m still dealing with gut issues and never thought to address the problem of fatigue. Again, thank you for this timely article. 
1. Richard Faust Community Admin
 Hi <inline-mention username="paul1701a" user-id="2267988"/>. You are very welcome and please feel free to keep us posted on how the appointment goes. I'm very interested in what you doctor may have to say/offer on treatment ideas. Fatigue is generally the hardest symptom to treat as the origins are so poorly understood, but there is research starting to uncover it. Wishing you the best. Richard (Team Member)
paul1701a Member
Hey Richard, Thanks for your kind reply to my post. I had my appointment late this morning. After addressing some continuing issues surrounding my partial bowel obstruction my doc thot it best to go back to a higher dose on my steroids. I agreed as things still aren’t right with my gut. I can’t eat very much at one time and still having to depend on drinking broth and softer foods. I did ask him about my fatigue. He said that he really couldn’t address that at this time because of my present condition. I just hope & pray I can indeed escape any further surgery. That could be very serious since I have only 80 inches of bowel left, I have an ileostomy, & had a complete colectomy some years ago. Due to short bowel syndrome I give myself IV fluids at home, usually 2-3 bags of normal saline a week. I have stage 3 kidney disease which almost cost me my life 3 years ago. That’s a long story in and of itself. Only by the grace and mercy of God did I come through that experience. Any way thank you again for your reply. I trust that you are well and that things are going well for you personally. Sincerely, Paul
1. paul1701a Member
 <inline-mention username="christine.laaksonen" user-id="8454775"/> Hey Christine, I do have a return appointment with my doctor about any issues with a higher steroid dosage. I have a very good relationship with him and can call any time I need if/when I am having any problems/symptoms. If/when I call he knows it’s serious/necessary. I did express to Richard Faust that there’s a possibility that I may be facing having to deal with a diagnosis of diabetes. There’s family history in connection with this issue. So, it’s a waiting game for now. I just don’t need one more thing to deal with. For now, I’m busy enough dealing with an increase in steroid dosage for now and how that will affect things. We will see what we will see. God willing my concerns about diabetes will be a non issue. 
2. christine.laaksonen Community Admin
 <inline-mention username="paul1701a" user-id="2267988"/> oh I'm crossing my fingers that you don't have to add a diagnosis of diabetes to the list. You're already managing so much, I can understand why you don't need one more thing to be dealing with. And thank goodness you have such a good relationship with your doctor! That can make a world of difference. Thanks so much for responding and sharing. Wishing you some relief! -- Warmly, Christine (Team Member)
paul1701a Member
Hey Richard, Thank you for your message. I had a good chat with my doctor. Dealing with the fatigue will have to be a back burner issue for now. Living on steroids, although not fun, does help me somewhat with low energy. There are the other side effects from steroids that are difficult to deal with. The end of the appointment was kind of greater concern when the nurse told me that when I get my next set of labs done for my return appointment is doing a fasting lab. He’s wanting to check my A1C level. My glucose was at 129. My long term fear has been for a while is that I will end up having to deal with diabetes. I have family history with that disease. My nutrition is difficult enough as it is. We will see what shakes out from that when the time comes. Until then I will continue to put my trust in being in God’s sovereign care. He’s carried me through thus far so I will continue to trust and not be afraid. I hope that makes sense to you. Thanks again for your kind replies. 
1. Richard Faust Community Admin
 Hi <inline-mention username="paul1701a" user-id="2267988"/>. Your concern about diabetes, considering the family history, is certainly understandable. That said, steroids can temporarily raise blood sugar levels. This page gives a good, brief explanation of the impact of steroids on blood sugar levels: https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=abq4195. I can tell you that my mother-in-law had to take high levels of steroids for a serious lung condition and it raised her blood sugar to the point that she actually had to take insulin to control it, however, when she tapered off the steroids her blood sugar returned to normal. It is noted in the page I posted that in rare cases it can lead to a new diabetes diagnosis. Your doctor should be able to provide additional information directly related to your case. Wishing you the best and feel free to keep us posted. Richard (Team Member)
paul1701a Member
Hey Richard, Thanks so much for your reply and the feedback you gave me. My wife and I were talking about this and she reminded me that taking the steroids would probably raise my glucose level. I had forgotten about that although I should have remembered this. It has been a long while since I’ve had to take steroids. I don’t take them unless there isn’t an alternative. Because of past steroid use I’ve undergone multiple surgeries on my hips, right shoulder and c-spine. I’ve developed severe osteoporosis for which I’ve recently been treated for that condition with Prolia injections. So, I’ve been down the path with Crohn’s for a long time. I’ll try to let you know how things progress soon. Thank you again for your interest and reminder about the effect of steroids on glucose levels. Take care & God bless you. 
1. Richard Faust Community Admin
 Hey <inline-mention username="paul1701a" user-id="2267988"/>. So glad the information was helpful and hoping that the glucose levels return to normal. I definitely understand about the joint issues that can come with long-term autoimmune conditions and the treatments (particularly the steroids). My wife, Kelly, was diagnosed at age two with juvenile rheumatoid arthritis and has had six joint replacements and other surgeries. Besides the glucose levels, I know that you know that, for the osteoporosis, tapering off the steroids is good thing. Managing multiple conditions is always so tricky! Wishing you the best. Richard (Team Member)