Imagine waking up in pain pretty much every day, and then chasing pain the rest of the day. What would it be like to lose your ability to do activities that you have always enjoyed, like handling tasks independently around your home, driving yourself places, traveling, or making plans with friends and family? What if you had a chronic, progressive health condition, and your schedule is full of medical tests, doctor's appointments, IV infusion, multiple surgeries, and it's a bit tough to know if you are going to feel well enough to do what you planned for tomorrow?
I know some everyday heroes that are trying to live well despite serious, progressive, and life-threatening illness. I bet you do, too. When I worked for a hospital counseling department, my fellow counselors and I took turns leading the hospital's Parkinson's disease support group, arthritis support group, cancer support group, and Alzheimer's support group. I also did home visits to counsel patients who were confined to home with advanced conditions like COPD, late stage ALS (Lou Gehrig's disease), advanced MS, advanced autoimmune disease, and end stage cancer. What an education in bravery it was for me to walk alongside such courageous people.
I used an exercise I especially loved to teach people about what it is like to age and develop a serious or life-threatening illness. We simulated loss. I had each participant write down on scraps of paper 4 favorite activities, 4 loved people, 4 cherished possessions, and 4 physical characteristics they each liked about themselves. Afterward, I circled the room with a small trash basket, and each time I did so, each person had to tear up and throw away one slip of paper from each category. This action symbolized the multiple losses that people go through as they age, and especially as they deal with serious, progressive illness. Next, I would check in with participants for their reactions as they had to give things up. There were profound feelings of loss, sadness, longing, isolation, anger, frustration, resignation, hopelessness, and detachment. All of these feelings are normal responses to the multiple layers of loss that people experience in facing chronic illness.
Progressive illnesses that are treatable, but not yet curable, mean experiencing one journey of grief after the diagnosis, and then recurrent cycles of the grief journey as the individual, and their family, adjusts each time there is further progression of the illness. Each step downward in mobility and activity means another adjustment. You can be accepting emotionally of your chronic illness,and then be hit hard by the next advancement of the disease which dares to take a bit more of your freedom and ability to enjoy life. Then there is a new adjustment to make.
What helps these everyday heroes who live facing pain and challenge everyday?
1. Keep the stress level as low as possible. Stress exacerbates difficulties with chronic illness. This family member can no longer be burdened with being a shock absorber for the emotional or life problems of family and friends. Set boundaries with toxic and negative people who increase your stress. You simply aren't up for it, and you must protect yourself.
2. Stay as active as you can, as long as you can. This is a good way to channel some healthy anger about the illness. Check with your doctors about what kinds of things you can do everyday. Can you walk down the block every day? Can you do some seated stretches? It can be helpful to have small daily goals that remind you that you are doing what you can to help yourself.
3. Seek out support. Often a big parade of support comes right after a new diagnosis, but dwindles later. One of my longtime patients has had so many surgeries for her condition that she is hesitant to tell anyone. Support groups can be helpful and informative, with other people who have your same condition sharing coping strategies, information about medical advances, and understanding. It can make you feel less isolated. Supportive counseling will also help, so that you can work out your feelings and get help in adapting.
4. Ask your doctor for help with pain management. Speak up and advocate for yourself if you aren't able to sleep, can't manage the pain, or have other symptoms that overwhelm you.
5. Ask others for help. There will be tasks you can no longer do safely or comfortably. Adjust to being okay allowing others who are close to feel good about helping you. Maybe your teenage grandchild can bring in the trash cans, change a high light bulb, walk your dog, or do some errands for you. This reminds me of a children's book I like which tells us "we love what we care for." We allow others to have the loving feelings of helping. You can also have services brought in to your home to help you live independently longer. It can be helpful to have a family member or friend accompany you to important doctor appointments and/or medical procedures.
6. Keep adjusting as the illness progresses. It seems it is a useful framework to keep asking yourself over time what makes sense now. Be patient with yourself. You are in the process of trying to adjust to a new normal, and what is normal will keep changing.
7. Develop your faith or spiritual side. It will help tremendously. It will help give you comfort and meaning.
8. Focus on what you CAN still do. My mom has had a rare form of incurable cancer for 6 years now, but still manages to be a completely emotionally-connected grandparent for our girls, despite all the changes and her diminished physical health. It's just that the granddaughters do the driving these days. It's one of those circular things about life, since she sweetly drove them to lessons after school for many years. Now it's their turn. Keep up your non-illness identity.
9. Set small goals. You need some things that you can look forward to. Whether it's a short trip between chemo rounds, or a much-needed visit with a friend, we all need the petite happinesses of something to look forward to.
10. Consider your legacy. Nothing makes you face your mortality like a progressive, chronic, or life-threatening illness. Mend fences. Let people know that you love them. Send cards. Don't let feelings go unexpressed. Do what you can to organize your household, your financial affairs, and have clear directives to family members about what your wishes are as the situation worsens. Reach out to the people who mean something to you.
If you know some of these everyday heroes, give them your compassion, your respect, and your kindness. Living with chronic, progressive and terminal illness takes tremendous courage and deserves our support. It could be any of us later, because life can surprise us with things we never imagined. All of our heroes don't make the news. Reach out to the ones you know, including those people who strive to keep living and contributing despite serious illness. Chronic illness is something you may have to contend with, but you want to fight the good fight and not let it define you.
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