Episodes, Spoonie Life

Dealing with Disappointment and Chronic Illness

The phrase “there are two sides to every coin” comes to mind when reflecting on disappointment and chronic illness.

Check out Episode 4 on Disappointment and Chronic Illness:

Podcast: Link

iTunes: Link

YouTube: Link

Facebook Support Group: Link

Instagram: @theinvisiblediaries

There is the disappointment that comes with finally receiving answers and confirming a diagnosis as well as the disappointment that comes when you leave the doctor’s office without any answers. Both deserve to be acknowledged as they are sometimes equally devastating.

Let’s take receiving a diagnosis to begin with. Maybe it’s been years of searching for answers, multiple specialists, countless diagnostic tests and appointments, and so much of your time and financial resources, you don’t know where to even begin. You finally arrive at a diagnosis, and your doctor feels like this is the “big monster” that explains the majority of your symptoms. You discuss your options for treatments to manage your symptoms, and come up with a game plan of what to do next. You leave the office feeling overwhelmed, and disappointed. I mean, you wanted answers, right? Now you know. Now there is a name and validation to go along with it. You leave the office feeling relieved, but there is some “other” feeling that you just can’t seem to shake. Could it be disappointment? “No,” you quickly say. “Don’t be silly.” Try to focus on the fact that you finally have some answers, you tell yourself. You should feel happy right? You should feel vindicated that you were right about everything that you were feeling, right? Now you are able to finally move forward with a diagnosis that will point you in the right direction for treatment. But that feeling is still there. Still nagging at you. What could it possibly be though? Heavy-heartedness. Maybe for as relieved as you are to finally have some answers, you’re also disappointed that there isn’t any “cure” for your diagnosis, or the quality of life that you were so hoping to get back is no longer on the table of possibility. Maybe you’re overwhelmed with feelings from years of being dismissed, or bounced around, and you feel let down by all of the physicians before who just couldn’t seem to figure it out, or worse…didn’t believe you. You’re allowed to be both relieved and disappointed. There is no right or wrong way to unpack what you’re feeling.

But what if you’re still searching…?

The other side of this coin is the side that leaves you with no answers. You’ve done your research. You’ve seen the specialists, and had too many tests to count, but your certain that this time you’ll get some validation. This time you’ll leave with information that will finally help you get back on track. You meet with the doctor to go over your results, but alas, he’s just as stumped as you are. No confirmation other than another referral to yet another doctor. You leave the office feeling like you just took another punch to the gut. Your heart is heavy and you’re heartbroken. The wave of disappointment that comes next is a big one. You’re tired, and don’t feel well and all of these doctors aren’t able to tell you what’s wrong. You’re seeking validation and confirmation that all of the things you’re feeling have a reason, and you’re not “crazy” or “imagining” what’s happening inside your body. You know you need to regroup, refocus, and restrategize, but this feeling is distressing and burdensome. A friendly reminder here. It’s okay to pause. It’s okay to feel broken-hearted and let down. The point is that you allow yourself to feel what you’re feeling and work through it in a safe and healthy manner, whatever that looks like for you. It’s okay to take off the superhero cape once in a while and allow yourself to be human. Disappointment is a normal, healthy emotion. It’s a common response when expectations aren’t met. Give yourself a moment to unpack it, process it, and recharge. Your mental well-being deserves the attention to heal just as much as your body does. Don’t short yourself the opportunity. You may even find you’re more prepared when you get back to your quest to find the answers you’re so desperately seeking.

How do you unpack it?

This is as individual as the bodies we live in. Everyone deals with things completely different and that’s okay so long as it’s in a safe and healthy way. We are huge advocates of self-care and a little additional attention in this department can go a long way. But, if you feel like it’s more than a little extra self-care will take care of, please reach out to a trusted friend, family member, or resource that can help you while you’re in need. There is never any shame in asking for help or what you need.

Some ideas we like to use but are not limited to:

  • Journaling
  • A walk outside in the fresh air
  • Listening to your favorite music or podcast or t.v. show
  • Having coffee or tea with a friend
  • Doing something creative
  • Taking a bath and soaking in your favorite bubbles, oils, or salts
  • Getting a massage
  • Dancing
  • Cuddles with your favorite human or fur-baby
  • Trying something new, whether it’s a new hobby, restaurant, food, or store
  • A therapy or counseling session
  • Joining an online support group
  • Refreshing your routine to help you out of the rut

No matter what, know that you’re not alone.

This chronic illness journey is difficult and it comes with more than its share of ups and downs. Nobody is immune to feeling emotions. It’s what makes us human. It’s part of the human experience. What we want to do, is remind you that it’s okay to feel disappointed. It’s okay to feel happy and relieved too. The point is that it’s okay to let yourself feel whatever feelings come up. Give yourself the time to take care of yourself. We know you’re a fighter Just know that no matter what, you aren’t alone.

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