Chronic Illness and My Twenties: Five Things I Learned


I want to share with you five things that I have learned from dealing with chronic illness in my twenties as a college student, and now, college graduate.

1. There’s no guidebook for how I should feel about my chronic illness.

Actually, there probably is one, but that doesn’t mean I should read it. As soon as the shock wore off, I realized I was going through a rainbow of emotions. I was happy to finally have answers. I was relieved that I had a confirmation for my suspicions. I was devastated to learn that I had been diagnosed with an illness that would never truly go away. I was scared about my future. I was worried (and still worry) that I would eventually need to apply for disability. I was ashamed. I felt guilty and helpless. I no longer felt connected to anyone in my age group because they were/are still going forward with life changes that I worried would never happen for me.
I eventually recognized that I was going through a mourning process. The person that I had imagined myself being was now gone. I would never have the same life, dreams or ambitions that I did before. A lot of important things in my life were going to change – my relationships with other people, my job, how I perceived myself and my future. While it is possible that I may never go through some of the same life changes that my friends are experiencing, I am going through my own changes.
If I wouldn’t tell myself to feel only a certain way while mourning anything or anyone else, why should I dictate the terms which I can feel during my own mourning process? Possibly one the best lessons I learned was that it’s important to allow myself to feel however I need or want to, for however long I need to.

2. If someone doesn’t understand my illness or what I’m going through, it’s their problem – not mine.

All of my chronic illnesses are, for the most part, invisible. What do I mean by invisible? If I bumped into a person in the grocery store, there’s a good chance that they wouldn’t have any idea that I’m sick.
This influences my life in a lot of ways. People often make assumptions and comments based on what they see right in front of them, and not necessarily what is actually there. To a total stranger, I look like a healthy, happy young adult. It’s easy for them to tell me to take the stairs when the elevator is busy, or to take the early morning appointment instead of an afternoon slot. It’s easy because they don’t see how much pain I actually feel, how tired I really am, or how short of breath I am after just vacuuming a room.
Remember that bit about allowing myself to feel however I want or need to, for however long necessary? I let myself feel sad for a long time. Then I decided that because they have no idea what I go through or how I really feel, their opinions, comments and snap judgments shouldn’t mean anything to me. I should only value the input that I receive from those who do understand what I go through on a daily basis, and choose to support me.

3. It’s important to find people who make me feel supported.

My social life took a nosedive after my diagnosis, but that doesn’t mean that I can’t find support from like-minded people in other places. I participate in a lot of online forums about chronic illness. Blogging provides both an outlet and an opportunity for interaction through social media, followers and networking. I try to stay in contact with the friends I do have by visiting them on good days. I also have a lot of family support, which means that I usually always have a person who can go with me to doctor’s appointments and procedures.
Having a strong support system behind me means that bad days aren’t as bad as they could be. I have friends who I can depend on and a community of people who are all dealing with similar issues.

4. I’m not like other young adults. And that’s OK.

I don’t currently have a full-time job. I don’t have any plans to go to graduate school, get married, buy a house, have kids or even purchase a new car. I don’t have the money or energy to live alone or to try to co-exist with a roommate who isn’t related to me. I don’t feel the same sense of being “lost” that many young adults complain about after graduating from college. I can’t relate to mainstream TV shows and movies about young adults, because we don’t have anything in common. Their concerns seem so superficial and worry-free, when I compare them to the tough decisions I have had to make in my short life.
I may not be anything like healthy young adults, but I’m not alone in these feelings. Social media and online communities have taught me that there are many young adults dealing with the same types of issues and experiencing similar feelings on a daily basis. On days when I start to feel like an outsider looking in on a society full of healthy young people, remembering that I’m not alone in how I feel, helps.

5. Life does wait for me to feel better.

This blog started as an idea after I was forced to quit my first job after graduating from college. I implemented the creation process (finding a web host, learning the ins and outs of WordPress, etc.) immediately, but due to circumstances outside of my control, could not start seriously writing or brainstorming until several months later. When that time finally came, my body decided it was a good time to have a major flare. Needless to say, I didn’t actually start writing until much later than originally planned.
While I’ve always been an ambitious person and no amount of illness will likely change that, I’ve had to learn to tone back my type A personality. There are things that can and will wait for my body to heal and recover. Forcing myself to “get out there” and “do something” is only going to cause me more pain, fatigue and flare-ups in the long run. Sometimes, the only thing I can do for myself is wait until I feel better, and then continue on with my original plans.

Are you a young adult? Do you have a chronic illness, or several? What are your thoughts on being a chronically ill young adult? Feel free to share your thoughts with me in the comments below!

6 thoughts on “Chronic Illness and My Twenties: Five Things I Learned

  1. Mia Chadwick says:

    I’m currently in my second year with 3 more to go (double degree) and the first year was a huge struggle with my chronic illness. Balancing study, work, doctors appointments, social life as well as time to myself was really tough, but eventually I managed to get myself into the right routine and surrounded myself with supportive people. Now its still a bit of a struggle sometimes but not as much as before.

  2. Vanessa McCulloch says:

    I’m currently in my undergrad and trying to cope with chronic illness. Which seems right now to be next to impossible. As my profs don’t seem to understand why I miss class.

  3. Liz says:

    I am trying to finish my bachelor’s, too, though it is a struggle. I have one year left, but have had to take a break from school because the symptoms of my chronic illness increased significantly in severity, making it impossible for me to continue. I’ve been out of school for the past three years. I’m a highly, motivated student and even I have thought about giving up once or twice.

  4. Laura Reed says:

    I am currently dealing with these same feelings ando trying to finish college. I do however have a husband and a beautiful stepdaughter who will gradiate high school this year. I know before you decide to be a parent with this illness be prepared to be a different kind of parent. I love my daughter for understanding. She has been there from the first signs so she has had to live with it as much as I have.

    • HR says:

      That’s awesome that you seem to have a lot of support around you!

      How chronic illness alters relationships (and how I approach them) is something I definitely think about every day.

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