The 21 Worst Parts of Having Multiple Chronic Illnesses
Living with one chronic illness is challenging enough. There are of course the physical symptoms of your disease to deal with, but it can also be stressful trying to manage the side effects, doctor appointments, treatment, changes to your lifestyle/routine and overall impact it has on your everyday life.
So when you add additional conditions to the equation, being chronically ill can quickly become even more difficult and frustrating.
Multiple chronic illnesses often means even more symptoms, medications, treatments, doctors and lifestyle changes to juggle – on top of all your daily responsibilities.
We wanted to shed light on the unique challenges people with more than one disease face, so we asked our Mighty community to share one of the worst parts of living with multiple chronic illnesses, and how they cope. If the following struggles sound familiar to you, know you’re not alone.
Here’s what our community shared with us:
- “They set each other off. A flare in one means a flare of all the fun comorbities. It’s like they amplify each other!” – Leah R.
- “People telling me I’m too young to have this many illnesses. I’m 26 and have six illnesses. I try to explain that pain doesn’t discriminate on age.” – Georgina W.Q.
- “When you aren’t sure which illness is causing the problem, or if it’s something all together different. Once you have more than one chronic illness you are also more likely to be diagnosed with more! It’s always a process of eliminating illnesses that could be causing the symptoms which can [be] time-consuming and frustrating.” – Meagan W.
- “Not being able to separate symptoms. Never knowing if it’s from your main illness, or your secondary, or not related at all. Because if you continuously write them off as normal, you could have other issues you’re not seeking medical support for, leading to more problems.” – Jessica-lee T.
- “The feelings of loss. They come into play in so many areas of your life… career, relationships, peace, hopefulness, sleep, the list goes on and on of things that are lost and though they vary from person to person there is always a sense of loss.” – Stephanie G.
- “The never-ending labs and appointments and tests and medication and not getting anywhere. Honestly I’m not coping very well. A work in progress.” – Rebecca G.
- “In 22 years of it, no one has ever tried to look at the big picture of my health, it’s always only one small part at a time and I suspect at least some of my symptoms are related.” – Danielle D.
- “People (including doctors, emergency department staff, etc.) looking at you like you’ve lost your mind when you tell them all your diagnoses. I’ve been sick for most of my life but I still get the look that says they think I’m a hypochondriac and then they have to say the words you get so sick of hearing: ‘you’re too young to have all that wrong with you,’ ‘well you sure don’t look that sick,’ etc… I really try to ignore these people unless I feel that educating them on my health conditions will help them.” – Tabitha H.
- “My three main conditions are hard to treat because of my others, i.e. most Crohn’s medication can’t be used for someone with multiple sclerosis plus a bleeding disorder, only a quarter of the MS medications can be used for someone with Crohn’s, postural orthostatic tachycardia syndrome (POTS) and a bleeding disorder, because of my Crohn’s I don’t break down and absorb most of my POTS medication. Any special diets that help treat one condition cause another to get worse. It always seems like at least one thing is flaring, like I am playing whack-a-mole.” – Anna C.
- “The loneliness. Some people don’t understand why you always have to cancel, or sit down, or leave early. Then you end up at home watching a movie with your cats.” – Brandi V.
- “Having multiple illnesses is a full-time job you never get a break or get to take a vacation from. You can spend every waking minute managing your illnesses, staying on top of them and feeling OK, but in the end it catches up with you because it’s so exhausting. The worst thing is wishing for a break that’ll never come.” – Amelia H.
- “Consultants looking at your diagnoses and commenting ‘well you already have quite a collection’ as if that means they can dismiss your new symptoms and not bother investigating them even though none of them explain your new symptoms and the current diagnoses are quite likely to all be symptoms of an overarching diagnosis which could explain all your symptoms.” – Emma P.
- “You never know what to expect. What’s going to happen next? How will I feel later today? Will I be able to walk tomorrow?” – Rebecca J.
- “Having people close to me tell me it’s all in my head or that I’m a burden that no one will be with for the rest of my life. How I cope? Smile in the morning, Oprah ugly cry at night. Sometimes you have to stop talking to people like that.” – Rachel F.
- “I have seven chronic medical conditions and I liken it to having to try and juggle seven balls and keep them all in the air at the same time and it is exhausting. It takes up 90 percent of my thoughts, every damn day. But I can’t afford to let one ball drop, [because] as soon as one falls, the rest come tumbling down.” – Janelle F.
- “People telling me that I take too many medications. I ask, ‘Which one shall I stop? The one that keeps my heart rate down, or the ones that fight depression, or anxiety, or acid reflux?’” – Christi C.S.
- “Not knowing which doctor to call first! All your doctors tell you you’re too complicated, constantly switching around all your meds, not knowing what disease/medicine is causing what thing. Nothing having a cure, being overwhelmed, never knowing how you will feel day to day or even in the next hour.” – Renee B.
- “Remembering to order all the medications, take the medications, chase up the missing one, pack it all when you go away, get used to sudden changes in format… It never stops.” – Gabbie J.
- “Wanting to not be a burden to friends and family by medical bills and letting them see me in pain all of the time. I cope by trying my best every day to smile and mean it.” – Crystal C.
- “When the best strategy for managing one is the most damaging for another.” – Jessica P.
- “Going to multiple specialists who don’t consider the effects of their treatments on the chronic issues they are not treating you for. Also having to make sure that what each one prescribes doesn’t have a harmful interaction with medications other doctors have prescribed.” – Kelly D.
Although everyone’s health situation is unique, know there are many others who understand the challenges of living with multiple chronic illnesses. To read more about the experience of juggling several health conditions, check out the following stories: