Living with illness is like sitting on a pottery wheel as a soft lump of clay. It doesn’t matter how long we sit there or what shape we are, as long as the hands of illness keep touching our life, we will be reshaped into something new.
Here are the top nine things I have learned through 21 years of illness:
1. Do it — whatever your “it” is — even when you don’t feel well.
There will be a million times it will be tempting to cancel. Don’t. Learn to push through the pain. Yes, you must take care of yourself and there will be numerous plans that will have to be canceled, but do your best to avoid making it a habit that lasts for years.
After two decades of illness, I have seen how all the pain blurs together, but the memories of the times I said “yes” and did something despite pain are the joys I treasure.
2. Utilize tools to live as fully as possible.
Whatever your limitations are there is likely a tool that can help. Whether it is a speaking program that types on your computer, a handicapped parking placard, or a motorized scooter, embrace the tools. There are many gadgets that can help you retain your freedoms like driving, or to follow your passions like cooking or crafting.
Don’t use the tools to compare who you once were with who you are now. Don’t look at accessibility tools as a line in your life of “before I needed it” and “after I needed it.” Be grateful someone came before you and was determined to not let their limitations stand in the way, making it easier for you.
3. Get out of the house.
Yeah, I know this makes you cringe because we hear this all the time from people who are sure we will be cured if we just get some fresh air and vitamin D from the sun. But we all need a change of scenery and seeing the same dirty dishes and dingy walls can quickly send you into depression. Walk outside and sit on the patio. Go to the local coffee house and check your email. Go to a movie, even if it’s alone.
Will it cure you of your disease? No, but it will put you back into the world and make your bed look even more appealing at the end of the day.
4. Stay abreast of new treatments.
Even if you don’t feel you need the moral support of people with your illness checking in with support environments is a great way to know how others are being medically treated. How do physicians across the country treat patients with the same disease you have? Be a part of the national organization for your disease and ask your doctor if he is openminded to new treatments as they come available. Be aware of research and treatment options so you can make educated choices.
I have always believed I was being assertive about my treatment, but looking back I should have pushed harder for treatment options that weren’t offered to me. When you don’t know about certain facets of treatment you don’t even realize the questions you should be asking.
5. Practice communication.
No matter how wonderful you think your relationships are there is room for improvement. Facing day after day of pain can make any relationship tense, and people make be reluctant to talk to you about your attitude or how you constantly speak of your symptoms.
We can easily blame our illness for our temper, attitude, and outlook and expect people around us to just accept it and cater to our needs and moods. This is a perfect storm brewing. Ask close friends how you can improve your friendship. Make sure your marriage is safe from underlying resentments that are buried that can one day shatter the relationship.
6. Be openminded to changing physicians.
I have always had rheumatologists I liked, but each met different needs at different seasons in my life — specifically my 20s, 30s and 40s. Even if you like your doctor, ask yourself if he or she is the best doctor for the season you are in — seasons for both your lifestyle and the progression of your illness.
For example, does your doctor support your desire to have a family? Does your doctor utilize treatments, like infusions or injections, or are your only options medication or surgery? Does your doctor have updated medical equipment? Does he have a list of more things you can try or is he giving up on you? Ask for recommendations and consider a change — even if you think you like your doctor.
7. Practice taking care of yourself.
The more you do it, the easier it will become. Ask, “Can you drop me off at the door?” Use a wheelchair so you can attend an event in comfort. Say, “I don’t do stairs. Do you want to take the elevator with me?” without feeling the need to explain. Say, “I need to sit down” or “I am going to step into the shade over here. Walk with me?”
Pride, shame, and not wanting to be a burden by asking people to accommodate our needs gets in the way of our well-being — both physically and emotionally. As you accept yourself for who you are, others will do the same.
8. Determine the purpose of your life and what you will rely on.
Obviously this is a big one! But what is going to hold you together when you have little support of friends, your body is falling apart, and all the feel-good-tips no longer work? For me, it is my faith. I have great faith in God and I believe He not only has a purpose for my life, but I have seen how He has used my disease in many ways.
This has given me the strength to hold on when there is no reason to hang on. It gets me up our of bed each day and without it I would quickly wilt on my own strength. You are going to need a foundation of strength when those spa bathtubs and a nightcap no longer work. Start seeking now.
9. Consider what you want your legacy to be.
What kind of person you want to be and what do you hope people will recall about you someday? Were you one who was always sighing and complaining about how no one understood your disease? Or did you show grace and character despite the pain, that taught those around you how one can be faithful through the fires?
Will you be remembered as a grandparent who always said, “I am too tired” or were you creative in finding ways to share special time with your family. What do you want your great-grandchildren to be told about you someday?
Rather than overcoming your illness, make it part of your character.
Living with a chronic illness may be a part of who you are. My illness is intertwined with every part of who I am. I barely recall that I was pain-free before age 24. I don’t remember the feeling of freedom of walking without pain or sleeping soundly. Yet, life is good. I must choose to make it that way each day.
The words “chronic illness” don’t bother me. I embraced them long ago, because I don’t see them as a curse, but rather as the largest chisel in my life that will determine who I am. How I cope with my chronic illness defines me — and even the lives of those around me.
Some days… it isn’t so pretty. I am hopeful, however, that at the end of this life my legacy will be, “She fought to live each day with so much joy… and encouraged others to do the same.”
I hope these suggestions are helpful to you as you develop your life into the treasure it is meant to be.