Dealing with a chronic illness is tough enough when you have the certainty of a diagnosis. It still comes with a wide range of daily and long term uncertainty but there is a certain comfort that comes with naming the medical beast. Going to the labyrinth of anxiety and confusion with a still masked beast just amplifies it’s effects.
I have dealt with both a periods of living without a diagnosis for my ailments which is a confusing, isolating and anxiety driven experience. I am now experiencing the situation from the stance of a parent with a chronically ill child.
So what are some tactics for coping with an undiagnosed chronic illness?
- Have faith in yourself. Trust yourself. You may find that you go through several doctors and even several specialists until you find your answer or you may never find your answer. I encourage you to trust yourself. You know your body best. You know when something is wrong and don’t let others including doctors tell you that “it’s all in your head” or you should give up.
- Trust your body and listen to it. While I am all for pushing one’s limits at times or stretching them a bit to help keep the body active. You need to be mindful of what your body is asking for and what it needs. Rest if you need to. What your body is craving and needing can tell you many things about your health at times as well.
- Find a support system. It’s important to try your best not to isolate. To reach out and find a support system that you can reach out to and engage in. Friends, family, church or perhaps a local health support group. Many cities now have chronic pain support groups sponsored by hospitals. Online support groups can be great but they can also contribute to isolation when it’s the only support system one has.
- Self care. This is really an important one for both physical and mental health. Taking care of one’s self enables you to then give to others. Make sure you are doing things that help you to recharge and give to your sense of self. Finding a hobby you can engage in, even if it has to be different than what you would do pre-illness is a great idea. Making sure to maintain the sense of self outside the illness is very important in my humble opinion.
- Explore alternative and complementary treatments. Massage, acupuncture, swimming(in a warm pool), tens machine, herbs, supplements, chiropractor. When used in conjunction and with the knowledge of doctors can be very helpful for many people when they can be utilized. Cost can be prohibitive for many.
- Don’t give up! Many diseases have a very long average time lapse between onset of symptoms and diagnoses unfortunately so don’t give up. Keep on going and seeking out answers while caring for your health as best as you can in the meantime.
There is a philosophy in the Charlotte Mason homeschooling world titled “Teaching from a State of Rest.” It does sound quite like teaching from the couch with a cold one but in reality it means teaching from a MINDstate of rest. One of calmness and without constantly comparing oneself to the “Joneses”.
Perhaps you can see where I’m going with this. Much as parents in the homeschooling world fall prey to comparing themselves to others so do Chronic pain patients. They compare and criticize themselves for not being able to do this or that even though it’s typically out of their control.
Teaching from rest in the Charlotte Mason world typically refers to entering in to God’s rest and trusting him to guide you.
Regardless of if you are religious person or not I believe the same principle can be applied if you only trust that you are doing the best that you can.
Going back to the principles I have discussed in previous post, you need to be mindful and know what you can and cannot do. I’m all for pushing the boundaries withing reason. Know that you will pay for pushing and that you will have to work in that recuperation time into your schedule.
Your children won’t remember that they didn’t get to go rock climbing with you like little Johnny down the street. They will remember all the times they did have with you and all the things they did do. How it’s so much better from this side of the fence of calmness and a “state of rest”.
I sit and watch my child go through his third trial on yet another NSAID hoping that this one will help. After having watch him cling to me out of prednisone induced anxiety attack. I watch him limp and listen to him cry because of the painful joints and a painful stomach from medication.
I stumbled upon a beautiful book of Prayer poems in a thrift store that has been a great gift of comfort at times like these;
A Prayer For Courage
Give me courage, Lord, to sail
My boat out from the shore.
I’d rather know the ocean’s gale
And hear the tempest’s roar
Than anchor safely in some bay
Because fear conquered me.
Let craft less daring inland stay —
Be mine the pathless sea.
What though my boat at last go down,
I know my courage shall not drown.
Oh grant me aspiration, Lord.
To seek the mountain’s height;
The lowlands easy joy afford,
But there ’tis soonest night,
My eyes shall watch the sun-light peak
As over rock and stone
I fall with ebbing strength, yet seek
The upward ways alone.
Though not far from the base I stop
My soul shall climb on to the top.
Give me a valiant spirit, Lord,
That bows not to defeat;
Though mine be but a broken sword
Face-forward I would meet
The onrush of my armored foes,
Nor beg on bended knee
That they withhold the fatal blows
Which they intend for me.
The victory’s mine if my last breath
Dare bid defiance still to death.
Photo Credit: Solitary Boat on the Sea, Horacio Cardozo http://www.horacio-cccccardozo.com/
Something I had been fearing since the beginning of my journey with Psoriatic Arthritis was that my then toddler son would develop an autoimmune condition.
When he started having joint pain at three my fear went even higher. We talked with his pediatrician and I journaled his pain and symptoms to spot any patterns that would point to something more ominous than “growing pains”.
At seven when he getting even more joint pain and would bend over from the back pain. I insisted on a referral to a pediatric rheumatologist. We found out that he was very hypermobile. Meaning his joints all bend and extend much more than your average person. The doctors believed that this explained his joint pain. We began weekly physical therapy to strengthen his weak muscles.
His hypermobility lead us down the path of geneticists who stated that he was right at the border for meeting the criteria for a genetic condition called Ehlers danlos syndrome type 3. Which lead us to the Cardiologist to rule out heart conditions(as EDS effects the collagen of the body and can lead to widening of the aorta). We have seen the Gastrointerologist as well as allergist because of stomach pains and chronic hives. We discovered a wheat allergy.
Then two years later we began having more joint pain, more back pain. The gave us the talk.
“Your child may be developing Enthesitis Related Arthritis.”
It’s a form of Juvenile Arthritis, basically juvenile psoriatic arthritis he just doesn’t have any psoriasis…yet.
Son of a ……….
“Do you have any questions?”
No unfortunately I know all the well what it entails so I didn’t have many questions at the time. I did a day or so later.
Here we are 3 weeks later and I have a child that is struggling to walk, who I keep finding on the floor unable to get after having fallen.
I’m hiding in the bathroom trying to keep from screaming,
as it feel as if the side of my face is being ripped off.
Doubling over silently banging on the door
through the hanging towels.
Teeter tottering have to get it together through the ice pick to the temple.
Leaning over the sink don’t want to lose my contents and sink.
Have to gather myself and carry on.
After all I’m;
I’ll admit it’s a bit of a cliche article to write but I have to write it. It’s gnawing on me!
Most of the articles you’ll see will focus on the “you don’t look sick” comments which I get….all the time. That’s not what get’s me. People don’t typically know better and they mean well.
What gets me comes from my doctors….
“You’re to young to have all these problems.”
That doesn’t make me feel any better. Doesn’t comfort me or provide me any information.
I’m not sure what it’s supposed to do. It’s not even that I’ve only heard it from one solitary doctor; it’s been several! Though hearing in several times from one doctor sorta pushed me over the edge and led me to believe he didn’t even remember our previous conversations. lol
I’m even unsure of the correct response for this from me…
“Perhaps someone should inform my body?”
” I guess my diseases forgot to ID me.”
I usually end up giving an awkward smile until they change the subject and move on. Perhaps I’m to kind to risk embarrassing them. What exactly do they want me to respond with?
I wonder at their motivation behind the comment. I suspect it’s their way of expressing sympathy. It’s an odd way of going about it.
As if I was older my diseases would make more sense.
In case you are curious of my personal constellation of diseases that would produce such as reaction from my doctors; Psoriatic Arthritis, Crohns Disease, Endometriosis, Trigeminal Neuralgia, Idiopathic Intracranial Hypertension, Degenerative Disc Disease, GERD, Epilepsy, Fibromyalgia.
What’s the strangest thing your doctor has said to you?
Organization…. A bit of a dirty word in my life. I’ve never been great at it. I’ve always seemed to lack that magically organizational gene others seem to possess.
Or perhaps as I’m learning it’s more a habit.
My newest discovery is Bullet journals. There are many all so fancy one’s floating out there in the world wide web. Such as the original Bullet Journal of course.
I’ve adapted and made my own personal little bullet journal with a main one page all in one stop shop for tracking my chronic illness aspects, to do list, appointments, as well notes about T(my son). Which typically include his medical issues as he also has chronic issues.
It has helped me to not only track my pain levels and other a various issues but to keep on top of To do items. Being all on one page it helps to limit the chance of me missing something. My medications and conditions mean that I’m more apt to do so and this helps to counter that. If I remember to go and chart my pain I also remember to go and look at my to do list and vice versa.
I also out all appointments into my phone so that I have another reminder as well with alarms. I will also put in other important things in if I really can’t forget. Really need to call that doctor tomorrow and must not forget? I put it in as an event and put an alarm on it so that I won’t forget to call.
I kept forgetting to take my medications especially when they were all in their individual bottles from the pharmacy so I bought a more expensive bill box system online called an anabox. I spent a pretty penny in my mind on that thing. Something that took me a while to do because I’m so stubborn. I didn’t want to give in. I think some part of me believed that giving in to that meant giving in on something else. I realize now it was part of accepting my diseases and accepting my life and the things I cannot change and it’s made me much happier. So now I can take each individual day with me(as I take medications four times a day) without having to take the whole thing) and I don’t have to worry about it accidentally popping open and spilling.
I try to do as much as I can to streamline my process and keep everything as visual as possible. I already am prone to forgetfulness and the fatigue and medications just amplify that in me. I am sure I cannot be the only one. My journal also serves as a log for my illness that I can share with my doctors when needed.
Are there any tricks or systems that you use to aid in organization?