As if actually getting a chronic illness (or like in my case, multiple) isn’t bad enough, there are things that make getting sick even worse than it has to be. No one is prepared to get sick, and no one is prepared for the absolute devastation of losing the life they had before, and everything else that goes along with it. Doctors don’t generally suggest support groups or give you a book to read that will answer all your questions, they just diagnose you and expect you to figure out the rest for yourself. The result is quite overwhelming, and very stressful. Here’s some of the things no one tells you…..
1. The Loss
The loss experienced with chronic illness isn’t necessarily tangible (although it can be), but it is quite significant. When you are first diagnosed, you may believe you can still go on living your normal life — and in many cases, you can. There are spectrums to all illnesses, and while some people may be completely disabled by it, others may be able to live their normal life with only small changes, as if nothing too major has shifted. I was woefully unprepared for the amount of loss I was about to experience. I was someone who was finally starting to get my life together, only to have it turned upside-down and then thrown out.
- Losing your job – Not everyone can relate to losing your job because of being too sick to work. Some people who are sick are able to keep working, some have gone from full-time to part-time, and some have even changed careers because they were no longer able to do the strenuous or stressful jobs they had before. If you’ve had to leave a job, you know the feeling of loss and defeat over having to leave your job.
Since leaving my last job, I have often felt like a failure, as if the biggest gauge of success in life came from your ability to work. Deep down, I know it’s not, and yet I can’t help but feel this way at times, because that’s how society has conditioned us to think. While growing up, everything was always about what we’d do when we grew up, what we’d be. It was never who we’d be.
The first question anyone at a party asks you is “What do you do for a living?” It makes it hard, because you don’t want to lie, but people make it awkward when you answer the truth “I’m not working. I’m sick.” They start to feel pity, and you don’t want pity, you were just trying to be truthful. - Losing faith – This doesn’t have to be about God or a higher power, but maybe it is for you. This can just be about faith in yourself, faith in the healthcare system, faith in others. Faith is a hard thing to get back once lost, but it is possible to. It’s important to have hope, and maybe that will help you find your way back to the faith you once had. Feeling hopeless is all too common, but we have to try to keep a little bit of hope.
- Losing friends and/or family – This one is hard. I never expected to lose friends when I got sick. Friends have disappointed me all my life, though, so I don’t know why I was so surprised when they weren’t there for me when my symptoms first started and the diagnoses started coming in. I plan to make a longer blog post about just this subject at some point, so I’ll keep this one semi-brief.
I understand that everyone has their own lives, their own families, especially at this age (I’m in my mid-30s), but from day one over a decade ago, many of my friends didn’t care. They didn’t believe. They didn’t believe my symptoms, or at least how bad they were, and they didn’t respect me. They didn’t ask me questions, they didn’t ask how I was doing, and they still don’t 10 years later. Sure, there are the handful that do. But it’s the ones that don’t that the brain remembers.
It hurts even more because often it’s the friends you’ve been there for, that aren’t there for you in return. It’s a wake-up call that you never expected to have. Often these are friends that you thought were best friends, who you thought were family. And that makes it sting even more, because you realize that after all these years, they only care about themselves. You never meant to them what you thought you did. This is a deep loss that will never fully go away, no matter how many years has passed, especially if they were important to you. - Losing your hobbies and favorite activities – Again, this one might not affect everyone. But upon getting sick, a lot of people lose some or all of their favorite activities. Maybe it’s running, maybe it’s hiking, maybe it’s concerts, maybe it’s traveling, maybe it’s drawing. There’s a lot of activities that chronic illnesses can ruin for us, but it’s just a matter of finding a way to do them in new ways. Maybe you can’t go running anymore, but you can try going for a walk. Maybe you can’t go to as many concerts anymore, but you find a couple you can go to. You just have to readjust your expectations to try to still enjoy the things you’ve always loved. Our illnesses have taken so much from us, we have to keep as much as we can for ourselves to enjoy. Find a way.
- Losing the life you once knew – this is the biggest, and probably most common loss that we experience. No matter how sick you are, there will be a loss of some kind. Whether you can’t work anymore, can’t participate in sports anymore, or can’t participate in your favorite activities anymore, there is a loss to the life you once knew. Again, it’s all about readjusting and trying to find a way to incorporate the things you can do into your new normal. It is possible to still have a full life with chronic illness, it just takes a lot of trial and error to find the right combination that works for you.
2. How Hard It Is To Apply For & Get Approved Disability
No one prepares us on how to apply for disability, and there’s no handbook to do so. Where do we start? How do we go about it? How long does it take? Can I do it on my own? Do I need a lawyer? It’s not easy, and it’s purposely not easy because they want to discourage us from applying in the first place. Once we get denied, they hope we’ll give up and not appeal so they don’t have to pay. It’s why I got a lawyer from day 1 and knew I couldn’t do it without one. 6 1/2 years later and I’m still denied, but I still couldn’t have even gotten this far without one, personally. Filling out the application, sending it in, gathering all the records from doctors (thousands of pages worth), the hearings, the appeals….. it’s a lot for anyone, but it’s especially hard and stressful for someone like us. We have so much stress in our lives already, adding to it is not healthy. A disability lawyer can help us by walking us through the process, and they don’t get paid (besides a retainer) until we get approved.
**If you haven’t read my story yet, you can read it here.
Disability Story: Part 1
3. You’ll Have No Money
Since quitting my job, I’ve been living on savings and scraps for 7 1/2 years. I’m too sick to work, and yet I still don’t have a disability approval 6 1/2 years after I first applied. In the denial after my hearings, I was told one of the reasons I was denied was because I was going out to dinner once a week with my ex-boyfriend, and traveling once in a while (at the time, it was an annual trip with my ex-boyfriend to somewhere within the country). That alone was basis for their denial, despite my doctor’s letters about how disabled I was and how disabling my conditions are.
I used to make jewelry, but was told by my lawyer to stop making it because they’d use it as an excuse to deny me, saying if I could make jewelry, I could work a full-time job. How the two are the same thing, I’ll never know. I did end up stopping, due to multiple things. My chronic illnesses were causing me to become unfocused and unable to get motivated. I was completely uninspired, when I used to be inspired by everything. On top of that, my hands and fingers were hurting from making the jewelry. It made me more depressed, because one of my favorite things to do has always been to make jewelry and create, ever since I was a teenager. I had my own small jewelry company and everything, but I just stopped everything.
I haven’t done it in over 5 years at this point, and part of the reason is because I was told not to. I’m sure this blog would be another reason for them to deny me. My doctors were telling me to make one for years, or write a book, and I put it off for so long because I was applying for disability, afraid they’d find it and make an excuse that if I could write something once in a while or post on Instagram, I would be able to work full-time. And I know if they find this, they will say that. But I realized how ridiculous it all is, and how they don’t equate.
So, since 2014, I haven’t had a paycheck. My savings have dwindled down to very little (I’ve learned to be very savvy and typically only buy myself things while on sale. I find great deals on clothes!)
Even those on disability cannot afford basic necessities or housing, because the pay is so little. As I explained in a past blog post, I will only get somewhere in the $800s per month if I ever get accepted, because I was a waitress 4 out of the last 10 years of my employment. Servers only make a tipped minimum wage, and I only made around $4.00 per hour there. Now, it’s a lot more, but it wasn’t then. There’s no inflation accounted in the disability amount, and it’s completely unfair, because I live on Long Island. Long Island is one of the most expensive places to live in the country, and there’s no way I will ever be able to live on a measly $800 per month — a 1 bedroom basement apartment is $2,000 a month. I couldn’t even afford my own place, or be able to eat, or pay my bills.
4. How Often You’ll Be At Doctor’s Appointments
As a child, going to the doctor gave me anxiety. Now, going to the doctor is my day out. Sometimes I look forward to going because I’m hoping they’ll be able to help me with whatever new symptom has popped up since my last visit. When it’s a new doctor, I’m often anxious because of PTSD from medical gaslighting from previous doctors.
Once you get diagnosed with a chronic illness, going to a doctor and getting testing done becomes the new norm. With dysautonomia in particular, it’s a condition that affects your autonomic nervous system, which is a multi-systemic disorder. Because of this, you need specialists in all fields, so you’re literally always seeing a new doctor. I’ve been to over 50 in the past decade.
This can make it hard to hold down a full-time job, because you’ll often have doctor’s appointments on a weekly basis, and you can’t take that much time off of work.
5. You’ll Become More Self-Aware
Since I was diagnosed so young with OCD (I was diagnosed at the age of 8), I’ve been very self-aware for as long as I can remember. I’ve always been in touch with my emotions, and I’ve always been able to express myself pretty freely. This can be a blessing and a curse, because some people don’t love the honesty and openness. I’ve always seen it as a positive though, and it helps you understand your own needs easier. It makes it easier to set up boundaries for yourself and others, and you know what you are and are not capable of, even if you don’t always follow your own self-awareness advice.
6. You’ll Become Stronger and a Fighter
Through pain and trauma, sometimes we become stronger. That was the case for me, I think. Sure, there are plenty of days (quite a few of them) that I feel neither strong or like a fighter, but overall, the entire thing has made me a stronger person. I have learned to fight for myself, advocate for myself, and speak up for myself more. There are still times I feel more meek and unable to voice my thoughts and opinions, to doctor’s in particular, but I’ve learned to speak up more than I used to. It is very important to be your own advocate.
7. You’ll Have To Cancel Plans and/or Appointments
Whether it’s plans with a friend, a family party, or even a doctor’s appointment, plans and appointments will be cancelled. I bet you never thought anyone could feel too sick to go to the doctor, right? Wrong. It’s possible, and it’s not uncommon. Sometimes appointments will be cancelled because you’re simply too sick or too symptomatic to make it. Doctor’s appointments take a lot out of us, and we have to feel well enough to even make it there.
As for plans with friends or family, you’ll feel flakey. I know I do every time I have to cancel. I’ve missed meeting up with friends many times, my weekly game nights with friends over Zoom, birthday parties, baby showers, and bridal showers. I can only do what I can do. You can only do what you can do. We can’t push ourselves if we feel too sick, it will just make us sicker. I’ve missed things that made me feel like a horrible person, that made me feel like a flake, that I know made a friend or family member disappointed. I always feel disappointed whenever I have to cancel or reschedule. Sometimes the rescheduling never happens. But we’re doing all we can, so try not to feel too guilty about it. We have enough to worry about without making ourselves feel worse for things we can hardly control, like our scattered symptoms.
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