If someone asked me what my greatest challenge was, with regard to living with an invisible illness and chronic pain, I wouldn’t even have to think twice before I answered “working.” The reasons are likely obvious to anyone who has a chronic illness and/or lives with chronic pain and those reasons are MANY.
We never know how we are going to feel from one minute to the next, let alone one day to the next. For me, something ALWAYS hurts. Not just a little annoying pain, but severe, debilitating pain. Luckily my brain seems to process primarily one pathway of pain signals at a time. This means that the most severe source of pain is what I feel at any given moment. Sometimes that is facial pain due to Atypical Trigeminal Neuralgia or Atypical Facial Pain (the doctors keep switching back and forth between these diagnoses) and TMJ/TMD, which feels like someone has placed a needle into my upper right teeth without ever taking it out. That pain radiates into my cheek, temple, head, and neck. Sometimes it starts in my neck and radiates outward from there. My other source of chronic, invisible pain is in the abdominal region due to Endometriosis, PCOS, Endosalpingiosis, and abdominal adhesions. I usually just refer to it all as “Endo” for the sake of simplicity. This is often the most debilitating pain of all because it is peritoneal quality pain, which has a tendency to affect a large portion of the body (stomach, abdomen, pelvis, lower back, and upper legs/thighs). Sometimes it is only a dull ache (my facial pain is usually more severe during those times), but other times it causes severe stabbing, cramping, ripping, crushing, and tearing pain which can bring me to my knees, cause nausea, severe GI symptoms, make it hard to breathe, and even cause me to pass out. Many compare Endo flare-ups to acute appendicitis or even labor contractions. It leaves the body in a constant state of inflammation and causes my abdomen to swell to the point of looking pregnant at times. All of this also causes a debilitating fatigue, which research has shown often reaches a level experienced by those with end-stage cancer. When that happens, it feels like my arms, legs, and other body parts are carrying around 100 pound weights (which is more than my total body weight). These are just some of the physical symptoms. The psychological and emotional symptoms are another monster all their own. Imagine trying to concentrate on work, completing complex or even mundane daily tasks, dealing with co-workers, attending meetings, managing stress, and meeting deadlines while feeling this way. Sound tough? It is. This is the best way that I know how to describe it but even these words don’t do it justice.
Despite the challenges described above, working with chronic illness and pain IS possible. I know this because I do it, I perform well, I still exceed expectations (according to my performance evaluations) and I have no intention of stopping anytime soon. Many people wouldn’t continue working in my state of health. Others couldn’t do it but I have no choice. As I have mentioned in previous blog posts, I have to keep working because I am the sole source of income and health insurance for my family. My husband cannot work. He is completely disabled but doesn’t qualify for disability due to my income level and his lack of work credits, so the responsibility is all mine. Yes it is hard and may very well be the biggest challenge of my life so far, but I know I can do it. I have been doing it for years and will likely be doing it for decades to come. It will never be easy but I have learned some tips along the way that I will share in hopes that they might help others who are struggling to start or maintain their careers and maybe make the process a little more comfortable or at least possible.
- Get plenty of rest and sleep. This isn’t always easy when pain prevents you from sleeping but if you can at least manage a good level of down time after work and on weekends, your body and mind will thank you. Those of us with chronic illness and pain take longer to recover from things that those in good health are barely affected by, like working nine hours per day, running errands on the way home, preparing meals, caring for pets, etc. We NEED our rest and if we expect to continue functioning without a major flare-up that leaves us bedridden for days, rest and recuperation are not optional. They are a MUST.
- Use a daily pill planner and keep your prescription and OTC medications close at hand. They may make or break a work day.
- Wear comfortable clothing, if your dress code allows. I am lucky to work in a casual environment so I have a lot of wardrobe flexibility. I used to wear jeans and a business casual shirts to work but as my Endometriosis has progressed and worsened over the years, I am finding it more and more difficult to wear them. For a few months, I wore sweat pants but even they have become too painful around my waist. I have discovered loose-fitting dresses (many sundresses with short-sleeved shirts underneath, so I don’t show too much skin). The dresses are MUCH more comfortable, don’t constrict my often swollen “Endo belly”, and look more professional than the alternatives. Even on good days, when I think I can once again tolerate jeans or slacks, I make sure to bring a change of clothes because I know that my body and symptoms can change in a split second so I want to be prepared to change clothes, if necessary.
- Keep any other useful survival supplies on hand. If you work in an office, like I do, that is pretty easy to do. I bring a heating pad to work, which I use often throughout the day. I also keep throat spray, Orajel, and ice packs on hand at all times.
- Try to eat small meals and snacks throughout the day. Stay hydrated with plenty of water and juice. Try smoothies or tea for an afternoon pick-me-up. I keep a Magic Bullet at work for this purpose and bring smoothie ingredients for the week, when I can afford it.
- Keep a list of your current medications, dosages, prescribing doctors, and other pertinent medical information on hand in case of an emergency.
- Protect yourself. There are laws in place to protect those with chronic illnesses and disabilities and you are doing yourself a great disservice if you haven’t educated yourself with the Family and Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA). Even if everything seems to be going smoothly with your career and you are blessed with an understanding employer, you never know when things (administration or management) may change and these laws are available for your protection, as well as your employer’s.
- Experiment with your endurance and your limits. When chronic illness and pain first took over my life, it was completely in control. I didn’t know how to deal with it and had a hard time fighting it. I have now learned that I can endure more than I think I can and often find myself pushing through flare-ups and illness that would’ve kept me home a year or so ago. When I make it through a work day that I didn’t think I could, I feel better about myself. Less guilt and more confidence. This may not always be the best choice for my health. In fact, it often ends up catching up with me but when it comes to days that include important meetings or deadlines, searching for that hidden strength and endurance may serve you well.
- Explore options to work remotely. Frequent absences due to illness and doctor appointments can place a burden on co-workers and supervisors. I attempt to minimize that burden by doing some essential duties from home when I cannot be at the office. A few months ago, I got permission to upgrade my laptop, so I can now connect to my office PC and network from home, which allows me to continue performing many tasks myself, even when I am not at work, and prevents my co-workers from having to pick up much slack when I am absent.
- Let your doctor know how your symptoms affect your ability to work and effectively do your job. I have found that my doctor takes that more seriously than anything else I tell her about and she appreciates my commitment to remain a productive member of society and therefore tries to make that possible by considering it when evaluating my treatment options.
- Be prepared to be treated differently. This is one of the harsh realities of working with chronic illness and pain and one that I have a great deal of difficulty dealing with. People treat me differently than they used to and I think that is a common occurrence for other “spoonies” who continue working. Some people may resent you for having to be absent at times and for acting differently than you used to because you don’t feel well and most co-workers (and some supervisors) have very little empathy and won’t even try to understand what you are going through. Some people will withdraw from you, whether that is because they don’t want to hear about your problems, they don’t feel comfortable talking about it (even though you would probably prefer to talk about other things anyway), or they just don’t know what to say. I have heard many stories from others in chronic pain, whose employers, supervisors, co-workers, etc. have turned against them and for those of us who continue working, I think it is in our best interest to consider the possibility that something of that nature may happen. The sad reality is that most people care more about how your illness affects them than how it affects you. This is one of the most hurtful issues that I have faced. Luckily I am close to my immediate supervisor and I can confide in him and vent my frustrations about pretty much anything, which is a blessing for me, but it is not that way with everyone and I know that many who work with chronic illness don’t have anyone left in their court. I really don’t have an answer, tip, or solution for this one. I’m trying to develop thicker skin and not let the hurtful words and actions of others bother me as much, but I’m not very good at that yet.
- Try to find relaxation techniques to help manage stress. If you find some that work, please let me know. 😉
I realize that none of these things will make working with an invisible chronic illness easy but I hope that some of the tips might make prove helpful. There are many times when I feel like the stress of working is taking a toll on my body and mind and making my conditions worse. There is a good possibility that this is true, however continuing to work also gives me a purpose, helps me remain independent, pays the bills (some of them anyway) and keeps me active, which in the long run is probably the best choice for my health.
See you soon! 🙂