Maintaining Optimal Mental Health with Chronic Illness
- Donna Reese
- Mar 1, 2021
- 11 min read
Updated: Mar 6, 2021
As a survivor of stage 3 breast cancer in my early 40's and now dealing with a debilitating autoimmune disease in my 50's, I feel that I have learned quite a bit about how to live with chronic illness while trying to stay positive and mentally healthy. As with any persistent or life-altering disease, even the most stoic person needs some time to come to grips with the shock, fear, and emotional roller coaster that comes with the disease. However, keeping depression and severe anxiety at bay during the long haul of your illness can be a challenge.
Seventeen years ago, I was taken aback when a cancerous tumor was discovered during my first ever mammogram. That experience was a shocking way to be introduced to the cancer world. I was all by myself at a routine mammogram. My biggest worry had been the fear of the non-invasive breast imaging procedure itself and if it was going to hurt. Being still relatively young, I did not know anyone else my age who had cancer or a chronic illness. Once I was diagnosed with breast cancer, I had to learn to navigate this unknown, frightening world without having any footprint to follow. Luckily, I found support through the American Cancer Society and loving friends and family. Many are not as lucky as I was to have this support network.
This past year when I was diagnosed with a rare autoimmune disease called Polymyalgia Rheumatica (PMR), I was once again thrust onto the chronic disease roller-coaster. This ride would not kill me but was equally disturbing compared to my cancer journey since PMR is rare, painful, and not many people understand how it impacts every aspect of my life. Most people and many medical professionals have never heard of PMR, myself included. There is very little recent research on it. Some of the web literature can be very misleading, causing delays in diagnosis, and sometimes medical professionals do not believe the sufferer's complaints of pain and disruption to their lives. Treatment at times has many side effects and does not work as well as predicted to put the disease into remission. There is very little updated study regarding new choices for the patient medically.
Luckily, there is much medical knowledge and documentation on the web regarding emotional support needed for some with a more familiar condition like cancer or heart disease. Doctors are attuned to how cancer/heart disease can impact their patients psychologically, and many have support or counseling programs where they can refer the patient. The American Cancer Society and American Heart Association have ample resources to help a patient emotionally during their time of need. I recommend tapping into their support groups as there are many and hopefully one that will suit every seeker. I went to a Breast Cancer support group at my local hospital and found it too depressing but was able to find a supportive community online that helped me tremendously.
However, many with other types of chronic illness may not have the support that a cancer patient may find. Like PMR, some diseases may be rare with little information or support to help keep one emotionally healthy. Feelings of frustration and being alone in the illness can cause depression and anxiety, especially as time goes on and pain wears you down, and there is no end in sight for relief. I did find a wonderfully supportive group online from Europe where PMR is not as rare as it is in the US. Much of what I have learned about self-care came from this support group. Also, knowing that I am not alone in this illness and having a place to compare notes has been a lifesaver for me.
For those walking in my shoes with a chronic or devastating illness, I recommend the following to help keep yourself in a positive frame of mind.
1. Give yourself time to grieve this unexpected and unwelcome change in your life. Talk to your loved ones, write, paint, exercise, meditate, find a support group or pray. Find whatever avenue suits you to allow to give free expression to your emotions. It would help if you had a way to vent your shock, disbelief, disappointment, fear, and anger that may come with the diagnosis. These feelings are all normal. But keeping feelings bottled up inside will only cause you to feel worse and possibly do more damage as stress can make disease worsen. For me, I took a writing course called “Write from the Heart." I found it very freeing to pour my emotions onto paper. To hear the other writers’ stories who were worse off than me moved my mental frame of reference back to a more grateful and positive one.
2. Research your disease and every aspect of your treatment. Knowledge is power. You can then talk to your doctor as a partner rather than a helpless patient. Feeling powerless while dealing with a frightening disease only puts you into a downwards spiral leading to depression.
3. Find a doctor that you like and one that will have conversations with you about any questions, fears, and ideas that you have and is willing to collaborate on your treatment. If you can find a doctor who will embrace this type of relationship while teaching you what you need to learn, it will put you on a path to healing mentally and physically. Having an empathetic doctor can make the difference by opening up communication, and you may be more willing to talk about your fears, side effects, and problems. You are more likely to thrive in this type of relationship. My first Rheumatologist would not let me speak or ask questions. I changed doctors immediately to a more empathetic physician. I am now comfortable with discussing most aspects of my disease with my trusted doctor.
4. Learn to advocate for yourself. If you have an idea or question, learn to express this to your medical professional. Being a quiet, “good” patient who never asserts any thoughts or desires will not help you recover. But it will hurt you emotionally by taking the passive role of a dependent patient and may hinder your actual treatment. As the patient, how you feel and what your needs are will play a big part in how the treatment plan should progress. Your doctor needs to get to know YOU. If your physician doesn’t ask how you are doing emotionally or for your input, and many will not, you need to speak up about your desires. Before my doctor's appointments, I would jot down my questions, needs, or suggestions to not forget to discuss whatever I needed for each visit. My doctors respected that, and one would even chuckle as I came armed with my yellow legal pad with notes each time. Bring someone with you to your appointments if you need an extra voice or someone to help you articulate your needs for you.
5. Take control of what you can control. There is such an unworldly feeling of losing all control when dealing with a chronic or debilitating disease. In many aspects, you cannot always control your side effects of medication/treatment, pain, job difficulties due to your illness, or the impact on your family. It can be a lot to bear and is hard on your psyche. Regardless, you can control many other aspects of your life. Purposefully acknowledge these instances where you have taken control. It will help you to feel empowered.
6. Maintain a healthy lifestyle. This recommendation was one way to exercise a little control over one aspect of my spiraling world. Besides helping mentally, it helped physically. I tried to exercise every day, even if it was gently stretching or walking. I remember when I was undergoing chemotherapy, walking around the block in my neighborhood, having to sit on the curb every 5 minutes with my heart beating out of my chest. I remember thinking that my 94-year-old grandmother could do better than me. But I kept it up and was able to build up my stamina gradually. I also learned to read my body. If I needed to rest, I rested. If I needed to move my stiff body, I moved. On my first go-around with chronic illness, my doctor told me to “eat healthy” when I asked about a specific diet for cancer patients undergoing treatment. That was all the instruction I was given regarding nutrition. My idea about eating healthy at that time was to start juicing and cutting out alcohol. Although doing that was a big step in the right direction, I look back now and know I should have done more research in this area or consulted with a nutritionist to understand the proper diet for cancer patients fully. I have found with my PMR that none of my physicians are willing to discuss nutrition or diet with me. I have resorted to researching autoimmune anti-inflammatory diets personally and have found tons of beneficial information on the internet about it. I try to eat a diet geared to decrease my disease's inflammation and cut out the main culprits that hinder healing, such as alcohol, sugar, caffeine, and grains. I added as much fruit and vegetables to my diet as I could. I feel that I am doing the best to optimize my health nutritionally this time with this condition.
7. Don’t believe everything that you read on the internet. Although I advocate internet research and support groups, be aware that not everything you read on the web is accurate or helpful. Sometimes it is downright scary. So as you read and research, do so with a skeptical practical approach. Try to stick to well-known medical sites such as CDC, American Cancer Society, WebMD, Arthritis Foundation, MedlinePlus, and NIH (National Institutes of Health). Large renowned hospitals are usually safe bets too, such as Mayo Clinic and Cleveland Clinic,
8. Discuss your research findings with your doctor before starting anything new. You may have found some great tips on dealing with your illness from your research, but going it alone without your physicians' input can be dangerous. For example, your medical professional will know what supplements may interfere with your medications and what is safe for an exercise program. Most of the time, they will applaud your determination to help yourself and wholly encourage you to try new things. But it is best if you are safe when trying new home treatments and lifestyle changes.
9. Eliminate stress as much as you can. This goal may be hard to do as it takes a concerted effort to do so. Stress plays a crucial role in disease. The more pressure you have, the more it interferes with healing emotionally and physically. I know with my PMR, stress is one of the precursors to getting the disease. Once I had PMR, distress brought on physical pain and flare-ups of the disease. Keeping my stress level to a minimum meant the difference between being in a lot of pain or having a decent day. I could feel the pain come rolling in if my body was tense and not resting as needed.
10. One of my most significant stressors was my job. Quitting my job seems a little drastic, but that was how I eliminated much of my stain. I had a hectic unforgiving job as a nurse working all three shits and 12-hour weekends. I could not come home early, go in late or take days off when feeling unwell. I really had no choice if I wanted to feel better. But if a job can be modified and there is an understanding boss, it may be worthwhile to look into some work changes to help eliminate pressure. Cutting off or limiting toxic relationships is another way to decrease stress. Having to deal with your illness is enough to handle. You do not need someone to upset you, cause more anxiety, bring you down or cause you grief. You need to put YOU first. I knew an acquaintance who was suffering from a lot of pain due to an autoimmune disease. She had an alcoholic brother living with her, and that stress was ruining her life. Her every waking moment was filled with constant upheaval due to her tumultuous home life. She could not heal and was in a downward spiral in her physical illness and emotionally. Her brother finally went into rehab, and she then started to recover quickly.
11. Plan something to look forward to every day. This tip is essential to gaining happiness. There is so much to drag you down when chronically ill that you need to purposefully introduce something that makes you happy EVERY SINGLE day. For most people, this involves getting together one way or another with friends and loved ones. For others, it could be going shopping or watching a favorite movie. It is crucial to spend time with others if you are feeling low. Even though it takes some effort, it usually gets brings your spirits up and "out of your own worrying head."
12. If you feel well enough, volunteer to help others. Doing something for someone else is a quick way to bring your spirits up. It can be as simple as sending a card to a shut-in or dropping off a meal to someone who is ill. When I was feeling sick, I could not be around many people due to low immunity. So, I volunteered at my church to drop off items to a food pantry and count donations for a shoe drive. This simple task got me out of the house. I was able to see other people in a controlled situation, and I felt good about helping others. Best of all, I forgot about my pain and difficulties for a while.
13. Be kind to yourself. Don't expect too much of yourself. Build-in rests if needed, and don't feel bad about canceling appointments if you are not feeling well. You are fighting to heal yourself and to make the best quality of life that you can. Nobody else will do this for you, so now is the time for self-care. It would help if you recognized that you are not in the same place you were before your condition. Some things will need to change, and you should be gentle with yourself when realizing this. I have always been one that prided myself on being productive and dependable. To no longer be working and sometimes feel not well enough to do what I would like to do is upsetting. But someone once gave me the sound advice to tell others that my doctor would like me to rest every day and that I can not always attend an event due to my condition's flare-up. People seem to understand and respect that. And I don't feel like I am letting anyone down as the expectation is laid out.
14. If you still are overwhelmed and your condition is repeatedly getting you down, seek professional help. With everything going on in your life, it is not surprising that many need some outside help to cope. I have found that some medical specialists have many good qualities, but dealing with depression and emotions may not be one of their strengths. If you have a good relationship with your primary doctor, ask them about counseling and medication to help your anxiety or depression. There is also online therapy which may be helpful. A good counselor referral from a friend, loved one, or physician is recommended. If, for some reason, you do not see eye to eye with your therapist, try another one. It is often a personality fit between you and your therapist that will help you the most during your counseling sessions. If your doctor prescribes medication, I suggest talk therapy in addition to medication, as you will still need help regarding how to cope with life's curveballs. When I was in graduate school, I was very anxious and upset due to having a busy home and work life and taking rigorous courses. When I graduated, I was surprised to hear that many of my colleagues were taking anti-anxiety medication to help them get through this stressful stage. It had not dawned on me to seek out anxiolytic pills, which could have been very helpful. I mention this to highlight that you should not feel weak or that it is unusual to talk to your physician about medication or professional help for anxiety and depression. According to the CDC, during 2015–2018, 13.2% of adults aged 18 and over used antidepressant medications in the past 30 days. Currently, this number is sharply on the rise. You need to do whatever it takes to give yourself the best fighting chance at overall wellness. Taking steps today will help to put you on the path to mental wellness.
NCHS Data Brief ■ No. 377 ■ September 2020 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics Antidepressant Use Among Adults: United States, 2015–2018
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