This post is something new I've been wanting to try and I hope you like it. God puts people in your life in funny ways. Elise was in a class with my brother and one day he overheard her talking about the medication she was on. He called me and told me that he thinks this girl in his class had what I had. I immediately wanted him to meet her just so I could lol! We soon became wonderful friends and I have to say that she has really helped me in times where I feel like nobody understands. I know I can text or call her and she 100% knows the feeling. She is a great support in my life and I hope that you enjoy what she has to say :)
Lovingly nicknamed the Tasmanian Devil by my family, it very quickly became obvious something was wrong -- my whirlish energy randomly depleted, naps in the middle of the day, and even asking for help as a strong-willed four year old was completely out of the ordinary. All these little mysteries unraveled the morning I woke up, unable to walk, with a knee -- hot and red -- nearly tripled in size.
The diagnosis -- there wasn't one. Tests were run, cancer was speculated, everything came back negative. My blood work was confusing at best, giving little help in the search for an answer. The only plausible speculation, Juvenile Rheumatoid Arthritis: an auto immune disease. Despite finding a possible cause for my symptoms, my Antinuclear antibody (ANA) and Rheumatiod factor were both negative, leaving doctors stumped.
Living in England at the time, my mom decided to make pit stop at Denver Children's on the way to see her parents. There, the diagnosis was confirmed, my knee was drained, and steroids injected -- the first of many rounds in Children's Hopsitals. My particular diagnosis, while not so rare, was quite interesting. My arthritis is Pauciarticular, meaning four or fewer affected joints. About 30% of children with Pauciarticualr Arthritis also receive an Iritis diagnosis, a strain of the disease affecting the eyes. Within this 30%, only about 5% of children are ANA negative, and within the same 30% only 5% carry their JRA into adulthood. We sent my picture to the dictionary company to paste next to the world "special."
Obviously, this is a diagnosis no child, parent, or family wants to receive. But to be honest, it didn't change much. God could not have provided a more perfect momma to defend me, protect me, and heal me. My childhood was normal because she made it normal. She spent countless hours researching treatments, doctors, and clinics to find me the best possible quality of life.
God always provides the energy and stamina I need to get through the day. Time and time again, it amazes me how he has used this diagnosis to bless me. (As strange as that may sound.) It's not a blessing I would have prayed for, but it's something I can't imagine my life without. It has forced me to rely on him for my daily manna. Everyday He shows His love in the way he cares for me, provides for me, and heals me.
My JRA may never go into remission, it may never go away, I may always be on medication. Yet, thanks to my family, my friends, and the endless love of my God, I'm positive we will conquer this together.
How to Love Someone with an Auto Immune Disease
It’s not easy – we aren’t the easiest people to love. We so desperately try to be everything everyone needs – never wanting to fall short in anyway. Unfortunately, that isn’t always our reality. Some days, we cannot keep up. No matter how hard we try.
We will have days where we end up in bed, unable to move, feeling defeated and beyond frustrated as our body attacks us. On these days, we need people who understand why we go from laughing and dancing, to crawling into bed. People who give patience when the day’s plans go out the window, because we can’t muster the energy for one…more...step. We need people who are secure in our love for them, knowing our lack of energy does not equate to apathy. People who understand when we are near tears and inexplicably grumpy, maybe we just need a snack and a nap.
We don’t need you to understand fully – unfortunately, you never will be able to. No amount of literature or study will ever help you fully understand what our bodies go through on a daily basis. Don’t say “I’ve felt that,” or tell us, “Oh, I’ve done that…I know your pain.” Because the truth is, you probably don’t.
And that’s OKAY! We simply need your love. Without – we feel alone, isolated, and even more exhausted knowing none of our efforts will be enough.
We need people who love us in our perfectly imperfect state – knowing there is no cure, that it will not go away – that our immune system is as innate to us as or hair color or the way we laugh. We need someone who will love our immune system the way they love our personality. It is apart of who we are, but it does not define who we are.
I asked multiple friends and family member who have lived with and put up with me for many years, “What does it mean to love someone with an Auto Immune Disease?” Their responses brought me to tears.
Speaking firstly to couples, my favorite professor and one of my dearest friends wove together a beautiful slice of advice. He has seen me through the worst and the best of my illness and has most recently watched my new relationship blossom.
I hope the following words from my dear friend touch your heart as deeply as they touched mine:
Love's perspective is guided by time...
The "new" and "unfamiliar" are the ingredients that propel intimacy in a new relationship. Couples should spend long, long hours exploring these unknowns and relishing in the accomplishment of just "knowing" and valuing that exercise of growing closer and experiencing intimacy.
Intimacy's offspring is ownership. It is because we are close that we feel we have a part of each other that no one else has, and this is where it gets difficult. It gets difficult because in this stage we do not want to be wrong in our own personal assessment of the relationship, and when our ideal gets fractured even in the smallest degree, we end up upset because the relationship is not exactly what we thought it was and this is exacerbated by the desire to "set it right" or "place it back on the right track". The image we own gets stolen from us by our own pride, and this can happen even when the best motives are present. We do not like to "get it wrong" or misunderstand or cannot seeming meet the needs of our love, and we do not like when our partner is unhappy, sad, sick, depressed, etc. Why? Because it is not the image that we have chosen to own. What must we do?
We must own another image, one that encompasses a relationship of varying phases of most everything including: intimacy, happiness, sadness, sickness, wellness, etc. Easier said that done? You bet.
I prayed for a man who would love me in spite of my chronic illnesses -- he loves me FOR them. He loves me in my adorable moments and he loves me even more in the EGR (extra-grace-required) moments. But there will be times when we both struggle to love in the way the other needs.
This reality bought to life ‘number one’ on my list:
- Choose to own an all encompassing image of your loved one – one that includes every facet of their life.
In truth, my loved ones don’t need this list – they live these acts of love daily. I’ll take a leap and say your loved ones don’t need this list either.
This list is for the rare, grey days when our friends and family feel discouraged. I compiled these responses to remind our loved ones what a phenomenal job they already do:
- Sometimes doing nothing with her is the best way to love her.
- Listen - and ask. People with autoimmune disease don’t look or seem sick. It's not the flu or a broken arm. Ask your friend how she is feeling and really listen to her answer. And you may have to ask “What’s wrong,” a thousand times before you will get a real answer.
- Even though she doesn’t have the energy to do certain things, she will still want to do them. You may need to find a creative way to make those things happen.
- She doesn’t need you to baby her. She needs you to be the one person who treats her like she’s normal.
- Sometimes she is just "done"...done talking, done engaging, done listening, just done. Do not try to figure it out, do not try to change it, and do not try to make it right. There is nothing wrong, and It is not personal It just is. She is recharging.
- Do not try to fix everything. We must be willing to let a dull, semi-unharmonious air hang in the room for as long as it needs to. We must admit we cannot meet every need, solve every problem, or right every wrong. The last thing she needs sometimes is us. Let her be.
- Sometimes she won’t want to be touched and no that does not mean she doesn’t love you. It only means she’s hurting.
- Make her laugh. Don't be afraid to crack jokes about it all, humor helps!
- She wants every part of her heart and body to be cared for, it’s fragile and has hurt – but is still so strong. You must take care to cover those sensitive parts with grace and love.
- Treat her to little things that make her feel happy or better - it could be something as small as food she can eat or a pair of slippers, or as big as a plane ticket for her to come and let herself be taken care of when she needs it.
- When she can't beat it, join her. For a day on the sofa or a drive to the doctor's office. Autoimmune disease can be very isolating.
- Trust that the relationship is fine if she does not respond right away, text you right back, or call. She is fine, you are fine, and the relationship is fine. Anxiety is an itch you just cannot scratch, and the more you try, the worse it gets. Just trust her. She will bounce back before you know it.
- Acknowledge that you will never understand exactly what she is going through, and this is the toughest of all because you love her and want to know her fully. But on this one, you just can't. This means sometimes all you will be able to do is love her and just be there.
- She doesn’t need you to carry her on the days she’s too weak to walk. She needs you to stand beside her and remind her how strong she is.