I’ve been living with chronic pain for over thirty years and writing about it most of that time, too. I have heard from hundreds if not thousands of individuals who also live with daily pain. That’s a lot of complaining to absorb; both my own and others. I have discovered both personally, and from others’ lives how important it is to have a spouse or significant other who is understanding, patient and most importantly of all, loving. I have also found it is often best to be alone. After all, there is so much to understand; sometimes, too much. When we take a vow “for better or for worse…in sickness and in health,” well, it’s fortunate there is no crystal ball at the church or judge’s chamber. I fear there would be a lot of “Nope” being said instead of “I do.”
Starting with the fundamentals of everyone’s life experience, we plan, we save and we hope for many things to happen in our lives. That’s just what humans do. We choose careers, colleges or vocational schools, blue collar jobs we like which allow us to use our skills or we take over family businesses. We achieve to reach goals, we sometimes succeed and at other times fail. We are all flowing in the same yet different directions as the river of life and timing dictates the scenario we find ourselves in. Sometimes we change that scenario through hard work, study and progression. Sometimes we screw up and have to change plans or simply start over. Always, we live with the illusion or perhaps, the delusion that we are in charge. In many ways it is a truth but in hundreds of other ways it is not.
Second and third chances come to all of us dressed in the differing garments of divorce, re-marriage, accidents, family changes or demands as well as the millions of vagaries of life. We are all at the mercy of wars and other disasters, some man-made and some, with no one to blame except good old Mother Nature with her nasty attitude toward we mere mortals. She can be a terrible old “bitty,” an expression my Mom used to use. This year, she has certainly been in a foul mood. If we can’t blame her we always blame God. Poor old God. He gets more complaints than the complaint department at Amazon.com. I’m sure He grows weary of hearing “Help me” far more often than “Thank you.”
I have never spoken with nor heard from any individual who planned on spending their life in chronic pain or chronic illness. Neither have any sought it out as a career unless their marbles were loose and rattling around in the buckets on top of their necks; you know those poor individuals who have yet to be caught in the net of a good psychiatrist?
Many have legitimately feared chronic illness happening based on the history of their parents or some intervention which altered their own lives when they were young but we are almost always surprised by this most unwelcome and irritating of all guests. Not only does chronic pain bring irritability but major change. We humans don’t like change; unless it’s good, like a new puppy or kitten or an enormous Christmas surprise package. Well, chronic pain is more trouble than a new puppy or kitten, much harder to train and as Christmas presents go, this one is far too expensive. Oh, if only we could return it.
However chronic pain and illness enters your life it’s a disruptive action and a huge jolt for you and I, the patients. How can it not be? While we are wondering what we did to bring this beast upon us, we are also looking for doctors, trying new meds, looking up the side effects and spelling diseases we may never have heard of while we take time to restock the Kleenex box and limp to the toilet. We always have time and energy enough to feel worthless, guilty, ashamed, martyred, bullied, pissed off, and isolated. We are suddenly pilots without wind nor thrust, Nascar drivers with a blown tire and infants without a bottle. I could write a book of all the conflicts we, the patients feel because I have felt them all and a million more.
One of the hardest things for us to remember is it also sends an electrical shock of sorts through the lives of our loved ones. Our spouses and/or lovers are hit the second hardest, with our children often in the third line of fire. How can they not be? They live with us, suffer the disruption, worry about us, have to listen to our complaints and often, have to suffer the financial loss if we cannot work. They also love us and feel a sense of loss; the commonalities of life are all askew. They wonder what to say to you as well as how to say it. Somebody has to worry about dinner. Who is going to do the dishes, vacuum the floor, clean the toilets and bathe the dog? Who is going to scrub that burnt pan that’s been in the sink for two days? Who is going to drive to the doctors’ office, fill the car with gasoline and go to the bank? Whether you are male or female, your feelings toward chronic pain are much the same as you and I have realized, everything has changed.
I hate change and like most of you, am resistant to it. You would think by now I would be used to it but it always comes as a surprise. I am most blessed of all those creatures on earth to be married to a good man. He is long-suffering until his fuse is lit, he is immeasurably patient and always kind. He’s a male so he can be subconsciously deaf and hates change even more than I. Like many males of our species he can single task only, unlike many of us women who can stir a pot on the stove, hold a whimpering child and his bottle, while helping another child with her homework…while singing I FALL TO PIECES.
I would like to share a few simple tips to live by if you are fortunate enough to have a spouse/lover who did indeed stick around. For the ones who were with louses, those who fled into the night at all of the prospects I have listed above: you’re better off without him or her. Move on. Tomorrow could be full of good surprises therefore, keep looking forward, not to the rear.
SUE’S TIPS FOR A LOVING RELATIONSHIP WHEN LIVING WITH CHRONIC PAIN OR ILLNESS.
1. It’s not his or her fault you are in pain or ill. If it is, the chances are you would have had he/she arrested, divorced or stabbed by now.
2. Stop talking about your health or pain all the time. It gets tiresome. I often need a good piece of masking tape applied to my lips to keep silent but stopped just short of that event.
3. Keep looking for help because you just might find it in the form of a new doctor, a new medication or another modality and include your spouse in the search.
4. Don’t lie. Even the smallest of lies can corrode a relationship. We live in the age of full disclosure. This isn’t a 1950’s movie where everybody knows Grandma has a bad heart except Grandma. Illness and suffering is a part of life. It may be an ugly part but it’s there…sitting at the table. You’re not the Invisible Man.
5. Continue to embrace life with your spouse or lover and do the things he/she enjoys as much as you can to get out to dinner, go to a game or movie, have friends over. Friends need to develop some understanding, as well as your family. “Spread” your understanding.
6. Stop feeling guilty because of the changes this wretched event has brought into your life. It isn’t your fault so stop laying that on your man/gal.
7. Don’t stink. Stay clean and well-groomed, get rid of those filthy old Garfield slippers and get dressed even if you are only planning or able to lie around in bed. Use some after shave or perfume, put on some lipstick (women only but it’s up to you.) If you must be in bed you can still do all of these and wear clean jammies.
8. Love your spouse/lover and appreciate them and let him/her know it. “Thank you, Honey,” does wonders for the human heart. Don’t be demanding. You are in pain, you’re not entitled or royal. He or she is doing an action or many acts for you out of pure love and practicality; if not, they would be long gone, adios, sayonara.
9. Never give up hope or stop trying to live the most joyous life you can. Remember: it is their life, also. Laugh together often by recalling humorous moments together, watch a funny movie or game show or just enjoy the antics of your pets, together.
10. Be understanding. He or she has their own pain to deal with. Don’t be it.
Well, my good friends and readers. That’s my list. I learned all of this through trial and error…his trials, my errors. I have much more to learn and frankly, so does he. I simply try to remember each day to thank God for bringing my spouse into my life 39 years ago. Ironically, we met in a hospital we were both working in and have spent far too much time in hospitals since then; at least we know the language and what to expect. Love each other and play fair.