The Frustration of Living With Chronic Illness

Living with Chronic Illness - When You've Reached the End of Your Rope

How can you deal with living with a chronic illness? Most of us have reached a point of frustration or even desperation along our journey. Here is how Ellen feels and ideas for how she can move forward.

My name is Ellen*, I'm 38 years old, 188 pounds, with depression/anxiety, high cholesterol despite proper diet and moderate exercise, hypertension, infertility, etc. I have about 10 more I could name but you understand my struggle.

I was diagnosed with a goiter. A physician had me take thyroid supplements for approximately two months, only to no avail. I had a thyroidectomy a few months later, and the rest is history. I inherited this condition from my maternal grandmother. I am the fourth female to suffer from this condition.

I've tried everything under the sun to help myself but without any success. Basically, I'm tired of not being able to see any results from my labor. I'm tired of doctor-hopping, tired of getting my hopes up that this idea will work, I'm just flat out tired.

I feel like I've left no stone unturned and so now I need permission and encouragement from you to give up, get over, and move on to acceptance of my current position.  Don't get me wrong, I'm grateful to be alive and I'm not contemplating suicide, I just want to relax and relieve myself of helping myself. Do you feel me?

I await your permission to let go and move on with where I am.

*Name and some personal details changed to protect her identity

Coping with the Frustration of Living with a Chronic Illness

Dear Ellen:

It may not be any comfort, but you are not the first person who has written to me saying that you just plain want to give up on figuring out how to get well.

I've been there too. I was ready to give up too many times to count. And there have been points where I did just flat give up entirely for a while.

It's frustrating, because even though you don't have a medical degree or much energy, you're expected to not only be your own researcher, be your own patient advocate, your own therapist, your own nutritionist and your own personal trainer. You have to do it at a time when you're more likely to want to curl up on the couch and nap from the sheer effort of it all.

Looking Everywhere for Answers and a Cure

I've been on a mission to be cured of my thyroid problem for more than 10 years.

I have Hashimoto's thyroiditis and am hypothyroid.  Some doctors refer to thyroid hormone replacement therapy as a cure. They use this term incorrectly, however, because it's just a treatment to manage the disease, not a cure.

By cure, I mean returning to the way I used to feel. Feeling well. Losing every single extra pound I gained.

 Not being so easily fatigued. Having thick hair and healthy skin. Periods that are normal. Arms and legs that don't tingle and ache. No periods of depression. No foggy brain.

I thought that somewhere out there must be the perfect practitioner, endocrinologist, herbalist, alternative therapy, mind-body technique, diet aid -- the one that offers the cure to all of my thyroid-related health issues -- the miracle we are all waiting for that's going to change our lives. I researched and tried most of them.

Many of us are searching everywhere for answers that will cure us; that will return us to "normal," to the way we "used to be" before we developed thyroid disease. We think that something we're not doing is the key.  There are always more questions than answers. It can become an obsession.

What If We Can't Be Cured? Learning to Move Forward

A few years ago, I stopped and asked myself the question, "What if we can't be cured?" What if, as much as we want it, and work towards it, we can't find all the answers?

What if we can't ever go back? It sounds to me as if you are at that stage. For me, there is only one answer. The only way to move is forward.

I had a very dear friend, Ric Blake, who was one of the rare people with serious, recurring, metastatic thyroid cancer.

He turned his struggle into a wide-reaching effort to help other thyroid cancer patients. He lived with his thyroid cancer for a number of years, with amazing patience and grace.

He had an incredible spirit and energy, living every moment in the moment without bemoaning the past or worrying about the future. He reached out to people, brought them together, and created amazing connections that changed the world for thyroid patients. It was awe-inspiring to watch.

Watching how my friend has coped with adversity, I realized that there was an important lesson for me. I needed to refocus my own efforts, and instead of simply trying to be cured, I should focus on being healed.

 And they are really two very separate things.

What it Means to be Healed Rather than Cured

For me, being healed means:

  • Accepting myself as I am, even loving myself as I am, with whatever limitations I currently have, without giving up hope that I can improve - in both mind and body
  • Refusing to live in the past, and refusing to worry about the future, but instead, living for now, enjoying this time, now
  • Learning how to value myself for what's really important, my spirit, my kindness, how I live my life, instead of focusing on the superficialities such as weight changes, thinning hair, a missing thyroid, not having enough energy to be everything to everyone, and other imperfections
  • And, above all, finding within the cloud of disease, the silver lining, the positive effects that thyroid disease has had on my life.

The Benefits of Living with a Chronic Illness

If you think about it, there have to be some good things that have come from your thyroid problem. You've made friends in support groups, finally starting to exercise, eating better and caring for your health, or perhaps just learning how to stick up for yourself with doctors. Or perhaps, taking the time to slow down a bit and take more time for yourself.

Having thyroid disease introduced me to many fascinating and pioneering practitioners, I've made lifelong friends of amazing and caring fellow thyroid patients. I'm learning how to treasure the days and weeks and months when I feel well, and to never, ever take my health or the health of others for granted.

As for my friend, his thyroid cancer was not be cured, but with his love of life and people and his refusal to focus on the negative, he was certainly healed in his spirit.  He constantly moved forward, while living in the moment, and never looking back. He was truly so much happier than so many people I know who enjoyed far better health than he does.

Acceptance and Choosing How You Live the Rest of Your Life

Struggling to feel well may always be a challenge for those of us with lifelong hypothyroidism -- or any chronic disease for that matter -- but there's one thing that no pill or endocrinologist or herb can change, and that's how we choose to live our lives, and whether our health controls us, or vice versa.

  • Can you find a way to focus on moving forward, without being pessimistic or optimistic, but neutral?
  • Can you stop viewing your health as a huge project hanging over your head that must be resolved?
  • Can you find some things that may help you live more in the moment, without giving up hope in the future?

Only you can decide if you have indeed done everything you can do -- and more importantly, want to do -- to feel better. Only you can decide if you have actually given it enough time, tried enough different thyroid medications, seen every practitioner you can, explored diets from low-carb to low-fat to low-cal, dealt with the mind-body aspects of chronic disease, and so on.

If you have truly done everything you personally can do, then the next step is acceptance, and moving on. It's deciding that it is time to focus on being healed, instead of being cured.

The only person who can give you permission to let go and move on is you. But please do know that as you move on, there are many of us moving on right alongside you.

Live well,


Continue Reading