The Emotional and Mental Effects of Waiting in Chronic Illness

The Emotional and Mental Effects of Waiting in Chronic Illness

One of the most difficult things I have had to learn in the course of dealing with my chronic illness is how to wait. Right from the beginning you are waiting for doctors in waiting rooms, waiting for tests- a whole range of tests from blood work to MRI’s to colonoscopy’s and endoscopy’s and anything else depending on your issue(s). Then, you wait for results which will either prove or disprove your doctor’s theories on what is wrong with you. If the tests are normal or abnormal in a way they were not expecting, this may prompt more testing where the waiting cycle begins anew. This waiting can be days, weeks, months and for many of us, years. This can have profound emotional and mental effects.

Everyone will have a different experience in regards to waiting, but for me what stands out the most is the emotional roller coaster which has lent itself to quite a bit of anxiety. As a person with chronic illness you’re in constant battle with symptoms. Old symptoms that no one has found answers to. New symptoms that are plaguing you each day and making life hell. And the possibility of future symptoms that cause you pain and anxiety and that no one will be able to find an answer to. It’s exhausting going to specialist after specialist, explaining to them what the issues are, what the symptoms are and sometimes getting a different theory for the reasons why you might be experiencing them. These theories are then followed up with zillions of tests, countless office visits and many prescriptions, which can have side effects of their own. It’s incredibly draining and tests the limits of your patience as well as the extent of the reserves of your hope.

Liza Zoellick

There have been many times that I have wanted to give up. Many times, where I have just come undone within the safety of my husband’s arms and told him no more. I don’t want to do this- I don’t want to do doctors or tests or anymore waiting. I’m tired of all these theories and no one being able to figure out exactly what is going on with me. I’m tired of surgery, and waiting to heal, only to be told later on that I need more surgery and that surgery is more complex and dangerous. I’m so very tired of waiting for my body to feel better. I can’t even remember a time now where I wasn’t sick and where I wasn’t going to see doctors and where they weren’t trying to manage something “chronic.” This kind of existence weighs on you mentally. The anxiety builds each day. It’s anxiety about the chronic illness itself, about the future with chronic illness and what that might look like and it’s also anxiety about the present. The anxiety is not only about how you are dealing with your chronic illness, but about how those you love are being affected by your chronic illness. You may not want to think they are being affected, but chances are, they are being affected in some way.

When I began having seizures way back in 2003, I really didn’t think it affected anyone but me and my husband. Little did I know that it was affecting my kids, and most of all my middle child who was so frightened that I was going to have one while she was not around to “save” me, that it was affecting her ability to go to school. Her anxiety, that I thought was school related was actually driven by my seizures. I only found this out recently, and she is now 20 years old. But she was missing so much school at one point that we had received a truancy notice and I had to beg her to go to school. It was a tough time for us, especially because she didn’t let us know that it was because she was worried about me. Kids worry about parents who are struggling with chronic illness, whether they show it or not, in ways that we might not register at the time. Even our family outside of our nuclear family may be affected by our chronic illness, they just may not be able to express it, or be able to come talk to you because it may not be something, they know how to approach you about. You may be the one who needs to start the conversation. Don’t feel like people don’t care or don’t love you enough. You may be surprised at the support you get once you open up about what’s going on in your life.

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Oh how I know the waiting game! Ten years spent testing, scanning, therapies, shots, medicines, you name it, I’ve tried it. Finally, unable to work and out of answers or options, I went on opioids. Although it took more yrs to mourn my old life and accept my new one, with limited abilities that the opioids afforded me. However, with the pain tolerable I’d managed many more yrs and expected my life, as limited but livable as it was, to be ok for many more years. We all know this is not to be. Bcz of all the reasons, “excuses” , we’ve heard over and over, life is ripped from under us, to start anew looking for answers that aren’t there! Many have given up, unable to endure. Now also bcz we’ve been stripped of the only treatment that has allowed us to carry on, many are experiencing new and added health detriment! Medical collapse is what I call it. Your blood pressure, your immune system and all that goes with that, your anxiety and depression. All things that were avoided or tolerable are now having to be fought all over again on top of the original issues with no help! We all ask why, why is this happening, why me, why can’t they understand, why can’t modern medicine fix this, why, why, etc. There are many answers, but none are quite good enough! For when there’s one option that help millions to carry on, at least with some semblance of quality, there’s just no excuse for denying it to those who need it. So we wait again for our government to get it’s head out of the dark ages and get a clue. We wait and try to educate, help them to understand. We wait for it all to be over and with hope in our hearts that it will be soon, one way or another!
Oh yeah, now also, many of us knows what ptsd feels like, living this nightmare over and over again! We fought so hard for so many yrs to win the battle, but now we must fight to win the war!

I’m right there with you. I have gone to doctors my entire life since my issue is congenital. I have never had a left leg. At 16, I got insulin dependent diabetes and at 18 my chronic pain began stemming from my gait. I wish I had all of that time that was stolen from me while waiting in doctor’s offices, hospitals and with mental health professionals. Once my mother died no one really knew what I had gone through. I now live with a husband in the early stages of dementia so “coming undone in my husband’s arms” is no longer an option. I find myself having to keep it together for his sake. I am now in survival mode and it is very difficult. I had no idea 60 years old would look like this,,,,

Linda

Thank You Liza. You are an inspirational writer. When you are waiting, that is God’s gift to us. Because you’ll be writing beautiful words to encourage us.♥️

OAN ( One America news) channel on Nov 8 2019 show The Daily Ledger, are reporting that the Mexican Government is in w/ the cartel & US Senate voted there’s no longer emergency on the southern border. Which is totally incorrect. That the president has offered help in eradicating the cartel but Mexico doesn’t want it. You have to ask why? That they know that the drug cartel is operating in New York City & also human trafficking & sleeper Cells in the United States to distribute narcotics. Iran has sleeper cells as well Distributing humans / drugs. So why is it that people like us who have chronic pain had to prove it have to pee in a cup & are mistreated by Physicians BC they’re mad that the gov for overseeing their business yet take it out on the patients BC Physicians know patience have nowhere else to turn to so they can treat patience however they feel. It’s not the patients fault to be in chronic pain , it’s not our fault about the cartels but yet we’re at the bottom of the totem pole & crap trickles down. Patients are abandoned & commit suicide. The problem is not with the patient’s so stop taking it out on us. All you have to do is read reviews of pain Management’s all across the USA see how the patients are now being treated badly it’s an epidemic.

Adam Selene

Been there, did that, now I need a T-Shirt !!!

Liza, another article that you hit out of the ballpark. Your words are so eloquently poignant. You look so cute in your new hairstyle. I hope you haven’t found that offencive BC now they’re writing into law a fine if someone finds your comments about your hair offencive. But it’s okay they leave us all in chronic pain but don’t talk about anyone’s hair LOL. I have been going through this giving up process since 2016. You are dead-on on about the waiting, test, surgeries, endless theories that lead to nowhere or in a circle. I have been very sick for the past 2 weeks. Not only dealing with my normal chronic pain but I got food poison, did my normal migraine process, the throwing up , now I have a sinus infection and upper respiratory cold what is bronchitis. I have not gone to the doctor BC I just don’t want to see their face. So I’m remain sick as crazy as it may sound. Like you said you hardly remember when you weren’t sick. I didn’t have very many years of not being sick. & thinking of that, knowing I will never go back. In some ways I ready for it to be over. I do not like dwindling away, knowing the medical community have turn their backs on a small minoot help of pain. I hate BC they know not what they are doing to all of us in chronic pain. Or maybe they do? Again your article was excellent.

Judie Plumley

I so agree with you. Chronic illness affects every person we know. If physical pain is not bad enough, anxiety and stress make pain so much worse. I am sure many doctors prescribe antidepressants because of this. Personally I think if they would quit making our lives so miserable, we wouldn’t be in so much pain in the first place. Talk about being exploited!
We all know those we can count on, who make us feel better. I am learning to use them, and build my team. My illness changed, which chafed everything else, but many times chronic pain only gets worse as life goes on.
We can’t do much about what the medical community does to us, but we can surround ourselves with people who love and support us, even if it’s through social media instead of in person. Thank goodness we have each other.

Maureen M.

HI Liza, love your cute new haircut! This is yet another great and poignant post of yours! And one that I could go on and on because I relate to it all! Life with Chronic Illness is not easy, all around. Keep strong Warrior! Maureen M.

Susan L.

Thank you for writing this piece; I didn’t even realize I needed it.

As a small child, I could accept any punishment I was given (nothing too serious), but I never could bear open-ended waiting: “Go to your room until I say you can come out,” was a fate worse than death: what if I was forgotten? What if I NEVER got out? I have always thought I could endure just about anything as long as I knew when I could expect it to end.

My poor husband is the sick one; I’m the caregiver. More than one of his (complicated and numerous) illnesses are progressive. Every doctor we’ve seen has told him he must avoid stress. So we wait—he doesn’t have the energy to do much more than that, besides work (bless him!) a restricted schedule. So I wait and worry with him, and I do everything I can to make him comfortable.

Last February, we hired a licensed general contractor to remodel our kitchen and two bathrooms, do some much-needed maintenance, and paint both the interior and exterior of the house. The 8- to 10-week job was halted due to a family crisis in the contractor’s family (that part was true). More waiting…but now, my sick husband and I can’t even share a bed: we’ve been sleeping in the family room since March, with hubby on an air mattress and me in a chair. 39 weeks have passed, and now the GC has abandoned our unfinished house, taking all our money with him. (Southern CA friends, do not hire BILL VAN DALSEM [#BillVanDalsem] or Western Sunset Builders!). I’ve filed a complaint, along with reams of evidence, with the Contractors State Licensing Board, so now…I keep waiting. I might sue the SOB, but that can be a terribly lengthy—not to mention expensive—process, and then there’s the issue of trying to collect on the judgment (which could be sizable, since there was fraud involved).

And this all requires potentially endless WAITING. And waiting equals anxiety. And anxiety equals stress. And stress kills.

Heaven help us all. God bless us Waiters.

Maureen

*colonoscopies*; *endoscopies*. No apostrophe needed in pleuralizations.