Terminal illness as we well know is illness with the likely termination of life here on earth. Clearly, devastating — I’ve witnessed it, sat with it, felt its impact. Now what about CHRONIC illness?
While it is not classically terminal, not typically removing the patient from this world (although it does many times lead to death by suicide), it is “life stealing.” I speak now for so many, with chronic illness, whose lives here, now, and forever have been “terminally” destroyed.
Yes, they are still here, but chronic illness (whether physical illness or psychiatric illness) leads to “loss” of life, starting with the loss of health and vitality, to friendships and families destroyed, careers ended, financial hardship from continuing care, and more. Chronic illness requires strength and stamina for a lifelong fight, lifelong illness, often with little support.
Why so little support? There are few who have the strength, compassion, and stamina to walk a lifelong journey with the chronically ill patient. Furthermore, sometimes it is easier for the patient to walk alone than deal with other people’s unhealthy coping mechanisms and grief, especially when we are dealing with our own grief. Some examples I’ve seen is minimization and denial due to their guilt for not being there, or feelings of helplessness and fear. Deflecting their anger onto the patient happens to deceased patients as well.
So yes, chronic illness leaves you with the patient and the illness. I ask you…
Will you have the strength to stay and deal with your grief, without deflecting it onto the patient in life?
Will you be able to address your sadness, anger, fear, blame, or denial?
Will you be able to come to a point of acceptance that the person you knew is “dead,” that this person will forever carry a burden they can never put down, but will continue to journey with it?
Will you ultimately accept this person and this burden?
Below I have compiled my master list of lessons I’ve learned in my 10 years of living with chronic pain and illness. I hope that this resonates with my fellow warriors, but also opens the eyes of those who may never have experienced this hardship and provide some insight, sympathy, and education.
1. Feelings lie. Especially those stemming from grieving the losses that come with chronic illness. The hardest lie for me to battle is that “my limits, somehow make me weak or worthless”. This is a common lie.
2. The great gift of life: the Re-route. Don’t get stuck — just reroute. You might miss the best detour of your life! Chronic illness changed the path I was on but I can re-route my life and I have, with each curve ball it has thrown me.
3. The moment won’t last forever. This goes for good or bad moments! Everything passes. We may be left with memories or scars, but the moment always passes by.
4. I don’t believe God “lets” things happen for a reason or to bring about good or strength. We live in a flawed world; illness happens. God gives us the grace, faith, and strength to get through (yes, maybe better than before, or with some good). I don’t think God caused me to get sick, so I could learn lessons, or help others, but he gave me the strength and grace to do those things despite what happens.
5. I have very little control over this life. I have the wisdom to know what I can and can not change and I must let go of what I can’t, which is a lot. I am still working very hard at this one. I can not change my baseline pain and there is no cure for now for my health conditions — I have to accept that. I cannot change the people who have been unsupportive, judgmental, or even hateful. What can I do? Focus on coping the best I can, focus on the treatment at hand, and focus on the love and support I have.
6. I was raised to be extraordinary. Life has a way of making you ordinary. Maybe the ordinary, everyday is where the true beauty lies…maybe a bunch of ordinary leads to being extraordinary. Society teaches us a certain definition of living an “All Star” life. This is a life defined by degrees, awards, the latest technology, latest fashions, newest homes etc. There is another definition of an “All Star” life, a life of purpose in service to others. Despite chronic illness I have seen many patients living “All Star” lives. Just as in the book “The Giving Tree”, even when the tree, was just a stump, thinking it had nothing left to give, it gave its friend a seat and it was good. It may not seem extraordinary but they live “All Star” lives, lifting other patients up, advocating for others, showing compassion regardless of their own pain.
7. Don’t strive for perfection. If you are constantly striving for perfection it will break you and it will affect the people around you. It will suck the joy out of life and you will miss all the joy of life’s glorious messes — the happy accidents. There is no perfect, no matter what society preaches. Chronic illness actually taught me that I have to let go of society’s standard of perfection.
8. Hold space for people. You don’t have to agree with someone’s decisions to respect their right to make them. You can listen and still hold your opinion. You can disagree with someone’s view and still validate the feelings.
9. You never really know what people are going through… or what they’ve been through. You don’t know what lies beneath the smile. Don’t judge what you see on the surface.
10. Communication can be uncomfortable. Communication can be scary, fearing judgement of our feelings or that they will be invalidated. However, if we don’t let go of the fear of the outcome we will never see the possibility. Forgiveness of those that have invalidated our worth and our feelings, is the hardest and bravest thing you can do; sometimes has to be done without receiving an apology. Sometimes unconditional forgiveness and grace has to happen from afar, at least for awhile.
Those of us with chronic illness have no choice but to walk this journey. I encourage those who know someone with chronic illness, to hold space for them, to walk beside them. Do not let your fear of difficult emotions keep you away. You will miss out on valuable lessons and witnessing much grace, strength, courage, giving, humility, an “All Star” life. Will you be an “All Star” too?