I wish I had a nickel for every time someone said ‘you look good’ when I was in pain, fatigued and feeling broken.
I like to use to an iceberg as an analogy for what my lupus looks like. Most people only view the tip of the iceberg but there is more than imagined below the surface. The iceberg analogy can be applicable in describing many different illnesses, such as depression. They may look ok on the outside but hopeless on the inside. It’s difficult for people to understand that you’re experiencing health difficulties when you look normal or ok. It’s not like a broken leg with a cast or walking with crutches/cane/walker or using a wheelchair where everyone can see the disability.
My rant begins with an experience I had recently when using my handicap placard. While walking into Jewel to pick up my prescription, I had an older woman approach me who proceeded to inform me that I parked in a handicap space and should be ashamed of myself for taking that space away from someone who ‘really needed it’. At first, I was dumbfounded by her gall but recovered enough to say I have Lupus. She continued to appear agitated with me so I said do you know what that is? A little less annoyed, she said no. I openly admit that I was frustrated and felt like telling her to kiss my @ss but attempted to explain that she had no idea what health issues I was dealing with and tried explaining that I have a heart condition and pain with swelling in my ankle and hip joints. The woman rolled her eyes and walked away before I could tell her that looks can be deceiving. I was raised old school and wouldn’t be disrespectful even though she was disrespectful and rude to me but I would have liked to tell her to mind her own damn business!
There are many disabilities that are not obvious and we should not be so quick to judge! As for my lupus, sometimes I actually have a limp when my ankle, knee and hip joints inflame but most of the time my symptoms are relatively invisible to the untrained eye. There are times that are obvious and others a mere rash on my face or redness revealing the butterfly rash. At times, when I get palpitations I stop, sit or lay down until the episode passes but it can last for hours at a time. I always carry my medicine with me to relieve some symptoms however it can take at 30 minutes for it to work. With my joint pain, sometimes it’s difficult to hold a full glass or cup in my hand or simply button a shirt because of my swollen, painful joints. I cannot lift a gallon of milk due to my joint inflammation! The fevers and fatigue take me down to where I’m confined at home and sometimes to bed. If my hip or knee is painful, sitting, standing and walking takes more effort and I compensate to get around and use a cane also I avoid the stairs. I keep a pull-out couch on my first floor when it’s too difficult to climb stairs due to fatigue or pain. Some days I can paste a smile on my face and fake it while other days I feel ok enough to enjoy activities and other days I’m unable to leave the house.
It’s hard to explain exactly how much having Lupus effects living a ‘normal’ life. I never know when or where that traveling circus of inflammation is going to put down stakes – that means I don’t know how bad the inflammation will be because it can vary from day to day. It’s difficult to make plans since I don’t know how or what will be affecting me most on any given day.
Life, in general, can be unpredictable for everyone.
For me, life is extremely unpredictable every day. I can wake up feeling ‘good enough’ but by noon experience palpitations with a heart rate of 120 at rest without any apparent reason which leaves me feeling fatigued for the rest of the day. Or run a low-grade fever preceded by body aches and chills. Or be up every hour during the night with palpitations or joint pain. Therefore, I try not to commit to activities by keeping everything tentative. When I do give my time to someone or something it’s truly giving a piece of me. It takes genuine effort to get to an activity and be social. True friends and family have realized what it means when I attend functions and don’t take it for granted.
Along with unpredictability, the loss of control is one of the hardest things to deal with. I’ve learned over the years to compensate so I can enjoy life to the best of my ability. On bad days, I rest with only bare necessity activities, on good days participate in minimal activities but get to socialize! Every day I try to anticipate by planning out my day and spacing activities with rest periods in between. I’ve learned to accept when my mind says go go go but my body says no no no!
Living with Lupus has its limitations but it doesn’t make me useless! Yes, some days are more challenging than others but I’m still me, caring, kind, considerate and helpful. I like to think of the classic movie “It’s A Wonderful Life”. If you’re not familiar with it, check it out. It’s about how one person touched the lives of many others without really knowing it. I may not be able to climb a mountain or run a marathon but I can be supportive of those around me and be a good listener. I am a devoted mother, sister, and friend. I can still make a difference in other people’s lives. I try to find the goodness in others as well as myself. Personally, I try not to compare my before lupus life to life after my lupus diagnosis but I think I’ve become a better person over the years, definitely more compassionate, appreciative and in tune to my surroundings.
A little self-awareness goes a long way. With self-awareness, we become better humans, better people. We need to find compassion and acceptance, to accept others for who they are. Life is about acceptance and so is Lupus. It has taken me many years to come to terms with who I am with lupus vs. the life I lived before my diagnosis. Every day I choose to be a survivor, NOT a victim. A life with Lupus is better than no life at all. Right? What’s the alternative… A dirt nap!
I start every day by saying The Serenity Prayer authored by the American theologian Reinhold Niebuhr(1892–1971).
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.