5 Truths About a Chronic Illness Warrior's Medical Leave

I, as so many chronic illness warriors, have had to take a medical leave of absence from my career.  During my leave I was asked things like, “Are you enjoying your time off?,” “You have lost weight, have you been spending time at the gym?” and “Are you going to travel while you are off – go and see your parents?” In my experience, those questions seem to be what the healthy world perceives is a medical leave for a chronic illness warrior but I am here to state the truth of what actually this leave means to a chronic illness warrior.

1. My illness is chronic, not acute.

My illness, disease, disability (pick your designation) is chronic which means it is not an injury or illness from which I will recover.  I woke up “sick” nine years ago. Daily for nine years, I have pushed through pain, illness and disability. Having to take a medical leave at this point in my journey means I no longer can keep up with the façade; it means my physical body is failing me.

This leave could mean a number of things are happening, but most likely it means the medication I have been using has lost its potency, which means I have to start new therapy. This leave could also mean that my blood numbers are dangerous, my internal organs are being affected or my pain is unbearable and the added stress of my career is too much for my body to physically handle.

I am not taking this leave to “recover,” I am taking this leave to survive. I have a chronic illness, which means when I return I will not “be better.” I don’t have a broken leg I need to stay off of for two months or pneumonia that requires rest for recovery. I may be in a better spot and my medication may be working better when I return, but I will still be “sick.” Side note, please don’t ask me “Are you better?” when I return; just tell me you are happy to see me back.

2. This medical leave is not my choice.

I have had rheumatoid arthritis for nine years which means I have been working with RA for nine years. I have pushed though and put a smile on my face and showed up to face my career for the whole time I have been sick. I have also fought my doctor numerous times when he has suggested work stress is not helping. RA has taken a lot from me and I have refused up until this point to allow it to take my career. I went to college and I have worked my way up the ladder for this position, and quite honestly I am angry that my hard work has fallen victim to this illness.

At the point I have to take medical leave, I know I can’t fight anymore. I know if I continue on the road I am on, then I will certainly crash and burn. And I do not want to give RA enough room to take my life from me, because my heart and lungs have been under watch for several years now. My body and medical team have made this choice for me since mentally it was too difficult for me to make. So know as I am handing my manager my “off work” slip I am crying. And those tears are tears of defeat and fear, fear I may not be able to return to my career.

3. I am not “enjoying” my time off.

I’m not sure why, but the healthy world thinks I am living the life when I am out of work. If I could “live,” I would be at work. There is a misnomer that a chronic illness warrior is collecting disability payments while shopping, socializing and traveling. Enjoyment is the furthest thing from what is going on during this leave. My leave is full of medication, doctor appointments and hospital visits. Because I have started new medication, I am dealing with a list of new side effects as my body is trying to adjust to new therapy. This explains my weight loss once I return. Also, because I am “sicker” than usual, I have more appointments during this time. I am spending my weeks with new specialists and I have to do more testing than usual. And new medications sometimes mean spending days at the hospital admitted to the infusion center.

While you will see me at Starbucks grabbing coffee, that is my use it or lose it reward to myself. You see, during my leave, I know I need to keep up with my daily walks even if they are at a super slow pace. It may take me 30 minutes to walk the half-mile to Starbucks and once I am there I will sit down and enjoy a cup of coffee as a reward. And my sit down reward may last a while partly because I don’t have the energy to walk back home at that moment.

I also continue to try to meet friends for lunch when I am not at medical appointments or the hospital. Sometimes I have spent all morning sick (in the bathroom) before I meet them for lunch but I still go. I meet them because I need to socialize for my mental health. As an outgoing person, being cooped up at home on leave makes me depressed. Meeting my friends no matter how much pain I am in helps my mental state and makes me smile for the hour we are together.

And lastly, let’s talk about all that disability money the healthy world thinks I am collecting. I don’t make nearly my actual salary on disability and I am still responsible for my medical bills (which have not taken leave).

4. I spend my leave fearful of two things: One, I may not have a job to return to and two, I have added stress to my co-workers.

The leave wasn’t my choice, and let’s be honest – it wasn’t my manager’s choice either. Thankfully in the United States we have employment laws to protect our jobs, but what happens if our leave extends beyond the 90-day FMLA policy? I spend my leave worried that if my “recovery” takes longer than the 90 days I am allowed by law, my company will decide to terminate me and I need the medical coverage my employer provides.

I also realize while I am out of the office that my manager has to find people to cover my desk and it takes a toll on my coworkers who are already stressed with their own workloads. I feel quite responsible for the leave I have to take and I have not left my position without thinking of its impact on others. I worry my co-workers will resent me when I return. I have always tried not to let my physical limitations put a burden on others and this leave means that it is. I spend my leave worrying about what is going on in the office during my absence.

5.  My illness is invisible.

Yep, I know I don’t look sick. I know I don’t look like I need to take a leave from my position. I realize you can’t see my illness. Maybe you see me limp or catch me throwing up in the bathroom. But I realize that my leave doesn’t make sense to my healthy coworkers. When a pregnant woman takes a leave people rejoice with her. We see her impending “bundle of joy.” I realize you can’t see my pain, my blood numbers or my internal organs. But just because my illness is invisible doesn’t mean I am not sick. My doctor, who is a specialist in his field, has decided this leave is the best avenue for my health and I have trusted his opinion. By making comments like “She never looked sick,” you invalidate my real illness. Please don’t bash me for putting a little lipstick on. Those pink lips are a façade – the real ones are blue underneath it. My illness is chronic and invisible.

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