I have Ankylosing Spondylitis: scary name for a crappy condition.
Now it’s out there. To know me, you need to know I suffer from chronic illness. I have since I was diagnosed at 30. And for the last 2 years (up until about 4 months ago), I have been really sick. But I still thrived! The catalyst to write this? I was looking at some videos I shot over the last 18 months and I was shocked at how worn down I looked compared to now. I mean, it was like cold water to the face. It was like a before and after President of the US pic. Check this out:
I mean I’ve never been Giselle, and I do like cheese and wine– so a little puff is the norm. But wow.
Many people suffer from some sort of illness (yes, I consider workoholics ill too) – so from a leadership perspective my own experience gives me great empathy for those struggling with, really, most anything. If you are a leader or an aspiring leader – I share my short story so you may gain some insight as well.
Why? Empathic, nurturing behaviors make for better leaders.
So here it is. I have a genetic condition that runs in my family called Ankylosing Spondylitis (AnkSpond), which I was diagnosed with at 30. One day I could move. The next day I could not. Like that, I couldn’t get out of bed. It was scary. Actually, the lead singer from Imagine Dragons, Dan Reynolds, just announced he has it. Also, for 80’s buffs, Mick Mars from Motley Crue has it (that is why he was a recluse for decades). And, get this, Ed Sullivan had it too. That’s why he walked so stiffly and never turned his head (just his whole body) to look to the side. He couldn’t turn his neck. People made fun of him, and had no clue he was suffering. Ain’t life a b***h.
AnkSpond is a systemic, genetic, autoimmune disease you are born with where your body attacks itself. There is no cure. The best way to describe it…It is just like (or really is) severe rheumatoid arthritis but it primarily effects the spine, ribs, neck and hips. If AnkSpond is not treated your vertebra fuse together and you get bamboo spine – you hunch over permanently. That is HORRIFYING. UGG. It inflames hands, wrists, knees and shoulders too. Also, it inflames the lining of the eyes that can lead to blindness, it inflames your aorta which can’t be good, and makes it hard to breath. When your sternum and ribs get attacked, your rib cage can’t expand. So, you feel like you can’t take in air. Good news is my diaphragm works, so I can breathe. It’s just really hard. And hurts.
Like Ed Sullivan, turning my neck is sometimes impossible – imagine having to turn your whole body to look for oncoming traffic. And forget about sleeping. When you stop moving, your whole body stiffens up – the weight of bedsheets hurt.
Proof? Check out this crazy-ment. I have to take pics to show the doc.
And some people must think I’m a nut. I remember being at an HR conference and my eyes were really red. I know people noticed, they didn’t hide it, and thought I just had a “late night”. Uh, no. Other people see me puffy/swollen and likely think, put down the grub sister. I just think “blame it on the pred, pred ne, pred ne, prednisone”…I just have to laugh. Oh, and then put on my fun pants (stretchy yoga pants). Still others hear what appears to be a sigh of frustration, it’s really me trying to get in a deep breath when my ribs lock up. Don’t judge a book.
Good news! There is treatment. Better treatments than ever. The treatments stop disease progression so I will not be a hunchback (sweet!). Bad news, some of them are literally low doses of chemo. They make you sick to your stomach. Others just tear up your stomach. Prednisone works like a charm, but then I look like the Michelin Man. Also, meds suppress your immune system, so chest colds are the norm. When you always hurt, fatigue is real. And the expense of the meds is – well – shocking.
I’ve gotten very used to giving myself copious amounts of shots, because when you get the medication doses correct, which can take years, then it is like a miracle. I’m close to the treatment miracle mix! That is why I feel/look rested. Finally.
I also have support at work, great benefits, freedom to go to the doctor and a rheumatologist that simply is saving my life. His name is Dr. Nop Unnoppett and his sister sold me the “Strong Girl” shirt you see in my Twitter picture (see above). Don’t cry for me.
So, what’s the point?
- When I saw my pics I had a visceral reaction to what I saw. A stark reminder that long term stress (pain, work-overload, etc) can change a person and they don’t even know it.
- Good leaders are empathetic leaders.
- You don’t have to have a certifiable illness to have the same physical response I have had with a chronic illness. Too much work, not enough sleep, chasing kids, and keeping up with The Jones’s can do the same thing.
- I never stopped or altered my commitments in spite of this situation. Stopping would have killed me. Going on much more would have hurt me terribly too. Advocate for yourself and take care of yourself. No one else will.
- If you are a leader and notice a shift in and employees attitude, demeanor, or anything else, it’s always a nice gesture to see if your employee is all right. I know some legal folks will say “don’t ask if someone is ill!” Y’all are adults here. If someone is struggling for God sake see if they are OK.
- Again, this is who I am, so to know me through this blog, I thought it right to share.
One thing I do feel very strongly about though – don’t give any chronic illness the power to stop you altogether. Rest and get back up. Cry and then feel better. I’ve seen some folks who let illnesses define them and it is just a sad, sorry sight. There is truth to fake it till you make it. Fake it through the bad days – a good day is around the corner!
Last but not least there are only two people who truly know what I have endured. My husband, Bo, and my starter husband (first husband), Chad. Thanks to both of them for what they have had to go through on my bad days. More people to thank — you know who you are.
If you want to give, check out: