Last week, I sent a list of questions to a fellow patient living with chronic pain. The words that he/she sent back to me were a powerful force; and, in them, he/she addressed the feelings and reality that so many of us face including isolation, financial instability, humiliation, and strength. Coincidentally, during the time I was receiving his/her messages, I was coping with a pain flare and loss of mobility on my right side that resulted in the feeling that “life was passing me by” because what I wanted to do and needed to do could not seem to match up with what my body allowed me to do. It was the author, Kurt Vonnegut, who dared us to create communities in which the disease of loneliness can be cured; and, that is what this individual’s personal testimony to living with chronic pain did for me upon reading it. Below you will find my questions and one individual’s honest and brave answers. This is one person’s photograph as to what it is like to live with pain. In this snapshot, it is courage that I see staring back at me. It is with tremendous gratitude to that individual that I share these words with you.
How long have you been a patient with chronic pain?
That’s not as easy to answer as it would seem; it’s been 7 years since my failed back surgery, so technically that is when my diagnosis of chronic pain started. But I was terribly abused physically for 9 years which I am sure contributed to the problems that led up to needing the surgery. But for your research, let’s go with the answer of 7 years.
How has pain impacted your life?
It affects every aspect of every moment, awake or asleep. I have had to change literally everything about my life in order to live around the pain. This includes trading in my beloved car because I could no longer use the clutch because of radiating left leg pain. You could also include moving, as I search for a warmer climate to combat the pain. It affects my social life and my mental health. It has changed everything!
Can you run down a typical day for me?
Not too exciting that’s for sure. I start the day slowly because I am in a lot of pain upon waking up. I don’t make early morning appointments because it is just too difficult to get started, if you know what I mean. I have the same thing for breakfast every day, peanut butter toast and milk, along with 9 pills to get the day going. After I get moving I clean out my cat’s boxes and take that out to the trash. By this time I usually need to sit down for a bit and rest my back. At 11:30 I have lunch and 3 more pills. If I were to have any appointments, now is when I would go, early afternoons are the best time for me because the pain medicine has started to work and I can function. Around 3 pm I lay down for about an hour to rest my back. BUT, come dinner time, 5 pm, when I take 3 more pills, the OxyContin has started to build up causing me to become drowsy, so I need to be home from doing any errands before this time. Otherwise I could fall asleep while driving. I spend a couple of hours during the day on my computer, checking emails and Facebook activity. I do not watch daytime TV; didn’t want to fall into the soap opera trap!! I do try to read and have been able to do that a little better than I could before. I love to read, but with all the pain medication I take, my concentration level is not what it used to be. I continue to watch TV, check out the computer or read until 8 or 9pm, which is when I take my last 3 pills for the day. After taking these, I will be asleep within an hour or so. I generally sleep from 10 pm until 7 am. I take Klonopin at night to help me sleep; it does a wonderful job. If the weather is nice, I try to walk my dog once during the day for exercise. If I go shopping, I am only able to go for one hour because it is too painful to be on my feet, walking on those hard floors. I play with the dog in the house for about 5 minutes at a time throughout the day. I was doing some volunteer work one day a week for 3 hours at a time. During this time, however, I would need to alternate sitting and standing/walking because of the back pain. I was doing data entry work for a non-profit organization.
How much of your day is impacted by pain?
As you can see from the above answer, all of my day is affected. Everything I do brings a level of pain with it. My pain score usually runs around 7-8, even with taking the OxyContin.
What is your relationship status?
I am single. I am not actively looking to become involved with any one at this time. I have placed that in God’s hands; if He wants someone special in my life, I trust He will bring that person into it. I feel it would need to be a very special person to have a relationship with someone in chronic pain. That person would need to be very patient and understanding, as so many times I am unable to function and/or keep plans if I am having a flare up. Who would want to be involved with someone who for all intents and purposes seems to be complaining about one thing or another all the time, right?? If it isn’t the back pain, then it’s my neck; if neither of those, then the fibromyalgia is acting up. It always seems to be something. That’s why I feel it would take a special person to be able and/or willing to handle it.
Do you find there is support for individuals living with chronic pain?
No, I don’t. There are the “pain clinics” with their PT and OT and psychologists, and there are our primary care doctors, but I haven’t found any real support. At the pain clinic, I felt that the psychologists thought that our pain was all in our heads and that we should be able to control it from there. That is ridiculous. Even trying to get legitimate medication from the pain clinic is a hassle. I suppose there are forums on the internet and maybe even support groups out there; I haven’t checked into either of those possibilities.
What treatments have you tried to alleviate the pain?
I have tried physical therapy, occupational therapy, talk therapy, massage therapy, injections, an ancient Chinese method called “cupping” and pain medications. I have also tried an arthritis exercise program in the water with no relief. Moving to a warmer climate is my next option.
What treatment is most effective?
For me, the pain medications have been most effective, but I am still in pain despite taking them as directed. But there is a choice to be made here; taking the pain meds means living with the side effects that they cause, ranging from inability to concentrate to drowsiness and dizziness. As I become more tolerant of my medication, the dosage is increased and then the side effects increase. It seems to be a losing battle.
What is a common misconception about chronic pain sufferers?
This is an easy question; we are all drug seekers. Another one is that the pain is all in our heads. We should just “get over it”. I would love to “get over it” but unfortunately it doesn’t work that way. Whenever I would visit the pain clinic to be treated for my pain (which is why they have them, isn’t it??) I was subjected to questions, blood and urine tests to rule out that I wasn’t on other illegal drugs, and/or was my blood levels therapeutic; perhaps I was selling my medicine? I’m — years old, for heaven’s sake and it is a crime to be treated this way. It is humiliating and hurtful. Another thing I run into is that the pain is all in my head. I just want attention. Everybody has back pain, so I should just learn how to deal with it.
Do you feel isolated as a chronic pain sufferer?
Yes I do. If I am included in any activity with friends, it’s all about — and his/her pain. Can he/she do this or that?? What accommodations have to be made on his/her account?? I don’t take part in hardly any of the activities I used to be able to do before the back surgery failed. I feel isolated socially.
How do you find distractions while coping with chronic pain?
It is not easy to do, but it is possible. This is where my faith plays a great part in my every day minute to minute life. I talk to God; I try to read as long as I am able to. In the warm weather I love to work out in my yard as I am able to. By no means can I do what I used to be able to do, but any little bit is a huge distraction. Sitting and enjoying the sun is good for me. I have been praying that this move is what God’s will is for me; I must say everything has been going along very smoothly to date. Things are just all working out as if they were supposed to. I hope that makes sense to you. God is a huge part of my life; He gets me through the tough times and gives me strength to do what I need to do in any given situation. I’d be lost without Him in my life.
Do you ever feel stigmatized with the diagnosis of chronic pain?
I think this question is similar to #9. Having a diagnosis of chronic pain sort of sets you up to being what must be a drug seeker in the eyes of a lot of the medical personnel. It also, as I mentioned above, makes you think it’s all in your head. Chronic pain is not a REAL diagnosis. It’s not specific enough for some people so they just blow you off.
How has chronic pain impacted your psychological health?
It has caused my existing depression to worsen. The constant presence of chronic pain causes one to be depressed; I feel they go hand in hand. Having already been diagnosed with depression, this made that even harder to treat. I have had additional psychotic meds prescribed to me in order to help alleviate the depression. I was not happy having another medicine added to my already long list of meds.
How has pain impacted your social circle?
As I mentioned above, a definite impact has been noted; primarily the need for “special consideration” to be given to me because of my pain. There are so many activities I used to participate in that I no longer can; this makes me sad and sometimes angry. But I always remember to give thanks for what I can do and try not to focus on what I cannot. Anytime I do do something, for example, go to dinner or a movie, I have to worry will I be able to sit still throughout the event or will my pain become so severe that I have to adjust accordingly. All of my current friends are very sympathetic to my needs, as is my family. At times though, in all honesty, I have felt that some of them wonder if I shouldn’t be able to do more, is this all in my head, do I really need all this pain medication, etc. I do find I have to defend myself to some of my family members, but all in all, I would say they are pretty understanding.
How has pain impacted your financial health?
The cost of my pain medicines has taken a huge toll on my finances. I put the need for medication ahead of my need for groceries, so as a result, I don’t eat as well as I probably should be. Then I have the costs of whatever my insurances don’t cover and my annual deductible to worry about each year. Whenever I get any money for a gift, I can’t spend it on something I would really like to get because I need to apply it to bills that are adding up due to the medication expenses.
Do you feel that people in your life understand what it is like to live with chronic pain?
I kind of went into this in the above question, but to reiterate, for the most part I feel my family and friends try to be sympathetic to my pain. I have had my pain questioned on more than one occasion, as have I had the need for so much pain medicine. It is not fun to have to defend myself in these situations. It is hurtful and makes me upset. I must say that unless a person has literally walked in my shoes they don’t truly understand what living in chronic pain is like. They don’t have anything to compare it to. Most people get the occasional headache or backache and say “I understand”, but that is not understanding what it is like to live with the chronic burning, stabbing, relentless pain and spasms that I experience.
What would you like others to know about chronic pain? First and foremost, that we as chronic pain sufferers are not “making this up”; it is not in our heads and we cannot control it by simply changing our mindset. Sure, there are mental exercises that can take our focus away from the pain, but they are not a “cure” for the pain. Living in chronic pain is a life sentence for most of us and our lives have changed dramatically because of it. Some sympathy would be appreciated versus skepticism.
Do you feel your medical practitioners understand what it is like to live constantly with chronic pain?
I must say that I have been blessed to have found my current PCP. She has a subspecialty in pain management. I was referred to her by my psychologist at the pain clinic. He has been sympathetic to my needs and instrumental in managing my ongoing depression issues. My PCP writes for my Oxycontin; she does so without question and without making me feel as if I am a drug seeker. She is a rare find. I am extremely concerned about finding a provider in [my new location] who will continue my current pain regiment, so much so that my psychologist wrote a letter of introduction explaining my need for so many medications. For that I am extremely grateful. I know many people experiencing legitimate chronic pain that are not as blessed as I am in having such wonderful medical personnel in their lives. They do have an extremely hard time getting their medication and are forced to undergo the humiliating drug screenings, etc. in order to get their medication.
What do you think needs to be done in order for there to be a better understanding of chronic pain patients?
Education and empathy on the part of the medical providers. As I said, unless someone has walked in your shoes, they truly cannot understand what it is one is going through as a chronic pain sufferer. It is unfortunate that there are so many people who abuse the medical system in so many ways that it makes it as difficult as it is for those of us with legitimate pain to get the care we deserve, without questions and interrogations!
Can you describe what your body feels like?
Most days like it’s been hit by a truck!! Pain sensations range anywhere from throbbing, burning, stabbing, piercing, tenderness, numbness and tingling. That dull ache is constantly present as well. My mind still sometimes refuses to accept my body’s limitations. This results in overdoing it and increased pain. So even if I were to have a rare “good” day I have to be very careful not to overdo it. Otherwise I am in agony for the next two or three days.
What have you learned about yourself as an individual that deals with pain on a daily basis?
I am stronger than this thing called pain because of my prayers and faith in God; they enable me to get through each day, one day at a time. I have had to learn to set new boundaries for myself. One of the hardest things I’ve had to learn to do is how to “say no”. Sounds easy but it isn’t for me; I am a people pleaser by nature and want everyone to be happy. I have found out that I have more courage than I thought I had, as evidenced by this move away from my family and friends. I’ve had to stand up for myself in order to get the medication and/or treatments I felt I deserved along the way. It’s been a long seven years, but as I said before, there are so many patients worse off than me. By God’s grace I am surviving and hope to be thriving in my new surroundings.