The Life My Chronic Illnesses Have Stolen From Me

Success and fulfillment mean something different to everyone. Every person has their own personal goals and wants to live their life a certain way. Life isn’t easy for anyone, but meeting one’s goals in life or at least getting by may be easier if a person isn’t chronically ill with limited functioning and/or resources, including money and “spoons.”

As someone in their mid-20s, it seems like everyone around me in my age group is working hard to make money to live and even to save for a house and retirement, gaining work experience and climbing up the career ladder, starting or finishing their master’s degree or other advanced education or training or getting married and starting a family. Scrolling through my social media reminds me how behind I feel in my own life; my illnesses have long dictated my life and have put it on hold, which is harshly apparent to me when my social media feeds are full of friends and peers announcing their latest job promotion, degree, house purchase or other accomplishments. I am happy and proud of their successes, while deeply sad about my stagnation in life and the many opportunities my illnesses have stolen from me.

There are so many things I want to do in life, but my life has been paused numerous times. I know I am smart, hardworking and determined, but those things don’t matter if I’m so ill I cannot get out of bed. When you have to spend all of the little energy you do have devoted to your health and simply getting by each day, there really isn’t time or energy left to make significant progress toward reaching your dreams. Of course, there may be good days when you are able to function at a higher level than usual and maybe even do something related to your goals, but it’s often just not enough to make a lot of headway on them. Furthermore, for many people with chronic illnesses, doing more than what they are normally able to do in a given day may result in the need for multiple days of recovery; one step forward can often lead to two steps back.

Grieving is the best way I can articulate how I feel about the effects my illnesses have had on my life. I am grieving the fact that my teenage years and my 20s have been far from an ordinary, semi-happy or fun time for me because I have been at my sickest during this time. I have had to focus so much on managing my health and simply surviving each day, while others around me seemed to be creating and maintaining social connections, pursuing their interests, enjoying their free time, traveling, building their resumes and making memories. Of course, I don’t know what other people are going through in their lives, and not everyone has such opportunities. I just feel deeply saddened that my illnesses have taken away opportunities for me to have experiences I want and to reach the goals I have for myself.

I think about what my life would be like if not for my illnesses taking control: I see myself in a place in my life where my goals do not feel so far-fetched and instead are a part of my reality, with significantly greater career and financial security, and maybe even plans of starting a family at some point. But this is not my reality. The sense of loss I feel when I think about everything I haven’t been able to do because I am sick is truly profound. It feels like you are a helpless bystander to your own life, watching the days and years pass by, unable to do much about your illness ravaging your life. It is frustrating that an illness, rather than you, can be in control of your life and that people who do not understand this pass judgment.

My chronic illnesses are finally in remission and have been for the longest amount of time that they have ever been in remission. For me, one of the most surprising effects of being in remission, besides the fact that I am in remission, is that I began grieving more deeply than I ever have all of the things I have missed out on because of my illnesses. As I became no longer debilitatingly sick, I was able to more fully realize everything my illnesses have made me struggle with for over a decade, and appreciate my newfound ability to do these very things, from seemingly simple tasks like getting out of bed in the morning, taking a shower every day and making sure I eat enough, to regularly volunteering, pursuing my passions, handling stressful social situations without debilitating anxiety and managing to work four or five days a week. I feel beyond grateful I am currently able to function at a much higher level than I was able to for a long time.

It is difficult, however, to basically start my life over after it was essentially the same for years. With limited job experience and financial resources, finding a job, working and supporting myself haven’t been easy. As of now, I am still only able to work part-time, and it feels like I will never be able to get to the point where I am earning enough money or gaining enough experience to no longer lack experience and financial standing.

People, especially in my age group, talk about “the hustle” of this time in their lives, working many hours and starting from the bottom so they can work their way toward greater career positions and responsibilities. However, I haven’t been able to “hustle.” I am starting years later than I wanted to start on my goals. Even if my illnesses remain in remission for a long time, for the rest of my life I will be experiencing the effects of having been low-functioning for so long.

One of the pieces of advice I have been given over the years by family, friends and counselors when I have discussed feeling behind in my life is that life isn’t a race and everyone goes at their own pace. While true, this sentiment is invalidating of the emotional pain and distress people with chronic illnesses may experience as a result of their illness’s impact on their life. Yes, life isn’t a race and we should try to limit comparing ourselves to others, but when you are hindered in your ability to reach or even work toward your goals, due to something out of your control, it can feel incredibly frustrating and discouraging. It can be difficult not to compare your life to others’ lives when you wish you were healthy and able to pursue your dreams like you see others doing.

Many people do not understand what it is like to be limited by chronic illness and to have no part of their life untouched by illness. Chronic illnesses take away a lot of things, among them being able to work toward one’s goals and being secure and stable. For people with chronic illnesses, grieving can result from the loss of opportunities, experiences and the disappearance of life the way they once knew it. It truly is a privilege to be able to do the things you want to do and work toward your goals.