Help is not a Dirty Word

I don’t know how to ask for help. Not in generic terms, but when it comes to my RA it’s something I really struggle with.

Last Friday’s Methotrexate dose was the worst yet. By Saturday night the nausea and pain was so severe that I was in tears. I couldn’t eat anything of substance all weekend, and come Monday morning I was weak, depleted and exhausted. But, running low on PTO and working for my tyrant of a boss, I forced myself up and out of bed on shaky legs. Getting ready, making a smoothie, a short walk to the bus, the bus ride and climbing the stairs at the T station left me completely wiped out. When I boarded the train there were no available seats. I wanted to cry.

I kept looking around hoping that a stranger would lock eyes with me, and, recognizing my pain and fatigue, graciously offer me their seat. A romantic notion at best. Eyeing the people sitting in the car’s priority seating, I rehearsed the words in my head “Hi. I’m sorry to bother you, but do you need this seat? I have Arthritis and I am having difficulty standing today”. It sounds so simple, doesn’t it? But I couldn’t force myself to say the words out loud.

Like many people with chronic illnesses, I spend a lot of time convincing people that I’m “sick”. The hardest thing is making people understand that my pain levels, and consequently my ability levels, vary WILDLY from day-to-day. And, since I usually stay home in bed on the bad days, almost no one outside of my family has a line of sight into just how bad those days actually are. In my personal life, this is hardest when I have to cancel plans with friends – usually last minute. I operate like this: GO GO GO all week and then crash and burn on the weekends. What this usually results in is me waking up on a Saturday morning exhausted and in pain and canceling lunch plans for later that day. My friends are very understanding, but I always feel guilty.

Work is a slightly more complex issue. My position is high stress, high intensity and highly visible within the organization, and, up until recently, I have been able to perform at that level. This has often been at the expense of my health, but when things blew up in April it really forced me to step back and reevaluate. Because it took me so long to speak up for myself, it’s been almost impossible to make people understand (1) the severity of my RA and (2) how quickly things have changed. Since then it’s been a battle even for simple things like leaving early for an appointment. I recently went so far as to complete the medical certification for intermittent FMLA.

The point is that even for the people that see me every day and know me well, it’s still difficult to make them understand the complexity of my illness, or, just how “sick” I really am. So when faced with the task of trying to do this with a stranger in one succinct sentence (and an audience of fifty onlookers) I just can’t do it no matter how desperately I need that seat. It’s really hard to be that vulnerable in such a public setting. It’s hard to ask for help. It’s hard to know that other people will judge me. It’s hard to meet the eyes of the people staring at me. It’s hard to try to prepare for someone refusing me the seat. But perhaps that hardest thing of all is admitting to myself that I need that seat enough to ask for it.

2 Replies to “Help is not a Dirty Word”

  1. I have a really hard time asking for help, too. 🙁 I spend all this time pretending to be “normal”, pretending that I’m tough and that I can handle anything thrown my way until I can’t. So I sit in my house with the dirty floor because vacuuming hurts and i pray that one day one of my family members will read my mind and offer to vacuum so I won’t have to say “please help”.

  2. Hi, I am 64 and I have osteoarthritis in my left knee. I am coming to terms with walking with a stick and a knee replacement in the future, I also have a form of hypothyroidism that does not respond to the treatment that the British NHS think is the only way to go. That results in what is usually identified as Chronic Fatigue Syndrome, another thing that the NHS won’t acknowledge let alone treat with any seriousness. Over the last 10 years I have had to cope with a marriage breakdown, not being able to sail competitively any more (which I have done since aged 18) , not being able to work and the consequential financial stresses. It has all ground me down to a shadow of the person I used to be. Reading your blogs and your R.A. story has made me re-think my attitude to life within the space of a couple of hours. Your positivity in the face of all you have to contend with is awesome, My next big challenge is moving house in the next few weeks and now I’ve gone down with a cold right in the middle of trying to pack stuff and throw out junk I have hoarded for years. I’ve sold my house (yesterday) and now have to find somewhere to live. My dear Mum who I lost in 2003 had R.A. and I had to watch her, gradually go downhill and suffer such appalling pain. The attitude of the medics here is very much that you definitely do NOT try to exercise through the pain of R.A. and just get weaker and weaker sitting in a chair all day. She did get on metho in the end but it was being administered as a daily drug orally where as you seem to take it differently. Sadly it was all too late and she had a heart attack and massive stroke and never recovered consciousness. She was alone when it happened and I curse myself that I wasn’t there. Me and my ex had been looking at solutions for her to come and live with us. When I get rid of this damn cold, I will get through this move and somehow look at exercising the bits of my body I can so I can get to the target weight where I can get my knee op. Thank you so much for your inspiration. A massive kick in the pants for anyone living with chronic illness.

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