For the first three months of getting sick and being diagnosed, I was in trauma.
The process of going from “healthy” to “having a chronic disease” was so frightening, rapid and unexpected that it took me totally by surprise and I know that I am not alone in that experience.
Having a chronic autoimmune condition, undermines you emotionally in so many ways and this can have a huge affect on every area of your life.
Here are the top 5 ways that living with a chronic autoimmune condition can undermine you:
1. It undermines your relationship with your body and your trust in it.
Before autoimmune disease, being sick was a temporary thing. You felt pretty crappy for a week or so, then you got “better” and back to “normal”.
When you have an autoimmune disease, you are told that there is no cure and that you need to begin to define your “new normal” and that will be dependent on your condition, your triggers and a myriad of other things you will need to discover along the way.
You whole life can change dramatically in ways that you never expected.
You can have new limitations and planning ahead can become almost impossible because your levels of energy, health and mobility can be very unreliable.
You may not even look like yourself anymore with bloating, weight gain or loss, hair loss, skin disorders and other distressing symptoms.
Your relationship with your partner, being able to work and your basic ability to care for yourself can all be compromised.
You grieve the loss of your “old self” and the person you were before autoimmune disease became part of your life and this can feel like a massive betrayal by your body that was once so reliable and healthy.
How to help yourself through it:
You need to understand that your body is not your enemy and it is not giving you symptoms deliberately.
The conditions that have created your autoimmune disease have probably been brewing for years with much of it beyond your control. It will take time, self-awareness and experimentation to find out how to best help yourself and your body feel better.
Learn to be kinder to your body.
Treat it gently and with love.
Research your condition focusing on positive interventions and lifestyle changes that you can make to enable your body to reduce symptoms and inflammation.
Actively partner with your body and listen to it.
As hard as it can be to accept, your body is always doing the best it can for you at any given moment.
By respecting your body and listening to it, you can help that process along.
It may have taken decades to get to where you are now, feeling better and reducing symptoms takes time and patience.
2. It undermines your confidence in your ability to cope.
A hallmark of living with an autoimmune disease is losing your ability to deal with stress.
Where once you could push through and get things done, the slightest stress including arguments, getting emotionally upset or pressure at work can be enough to trigger a flare and leave you feeling shaky and wiped out.
Adrenal fatigue or depletion goes hand in hand with many autoimmune conditions which adds to the loss of coping skills.
You forget things or make stupid mistakes.
Brain fog can create slurry speech, clumsiness and your ability to concentrate and focus goes out the window.
When you are going through a flare, thinking, talking and studying can be just as exhausting and draining as physical exertion and you end up with no fuel left in the tank at all.
Your motivation disappears along with energy levels, making everyday tasks and routines seem totally overwhelming.
How to help yourself through it:
Stop comparing “how you were” to how you are right now.
It is the emotional equivalent of kicking someone when they are down.
You are doing the best you can with what you are going through. Remind yourself of that often.
Do your best to reduce and eliminate as much stress as possible. Making simple changes like not watching the nightly news on television can make a huge difference. Avoid programs that produce fear, anxiety or upset.
Respect your current limitations. Rest when you need to and stop pushing.
Ask for help, especially around the house and with meal preparation. Stop trying to do everything yourself.
This was a huge one for me to overcome but it made a massive difference.
Most importantly, speak kindly to yourself. Keep a close eye on your self-talk and be ruthless about cutting off any self-criticism as soon as it begins.
You have enough on your plate to deal with so start shutting down your inner critic as soon as they speak.
Take some time to really relax. Just 5 or 10 minutes laying or sitting comfortably listening to soothing music, nature sounds, meditating or hypnotherapy allows your body to release stress and anxiety and feel rested.
3. It undermines your trust in the future.
Facing life with a chronic illness can be a huge slap in the face, where the future that you planned is gone and any certainty that you had in life goes along with it.
Your ability to have a relationship, a family, a career or even a simple thing like a holiday may be in doubt.
It can shake your faith in yourself and everything that you believed before your diagnosis.
Doctors may scare you with “worst case scenarios” of disease progress and outcomes or trivialize your symptoms and how you feel.
You may come face to face with your own fears of death and dying and be incredibly anxious about what you may be facing and how you will deal with it.
Facing a life with chronic disease can be a major crossroads in your life that will bring up lots of emotions.
How to help yourself through it:
Make sure that you give yourself time to process everything and grieve. Speaking to other people who have an autoimmune condition can be very healing as they “get it” like no one else can.
Getting some counselling can be incredibly healing. Having a non-judgmental and supportive person to talk to and who you can be safely vulnerable with is a gift.
Once you have begun to come to terms with your challenges and have a plan in place, it can be time to sort out what is really important to you.
How you want to live. What you want to do. Who you want to have in your life.
As difficult as my illness was, many positive insights and growth have come from it and my relationships are deeper and better than before.
4. It undermines your faith in Doctors and the medical profession.
On average, it takes over 4 years and seeing 6 doctors to get a diagnosis of an autoimmune disease.
For many people, it is much longer.
Even once you get a diagnosis, finding a doctor who understands your condition, is open to a multifaceted approach and is willing to partner with you to get you the best health possible is incredibly difficult.
In fact, many patients experiencing common autoimmune symptoms of exhaustion, anxiety and depression are told that it is “all in their heads”, labelled as hypochondriacs, sent to see psychologists or psychiatrists, given anti-depressants or anti-anxiety medication or told that “they have to learn to live with it.”
It is very common to read or hear about people leaving the doctors office in tears feeling that no one can help them, wondering if they are going mad or if they are going to die.
In the case of many thyroid patients, despite feeling exhausted, gaining weight, losing hair and experiencing pain and anxiety, they are told that their blood tests are “within range” and that they are fine.
We have been taught to trust doctors and to believe what they say. When you can’t find a doctor who will believe you or support you, it can be hard to know where to turn and who to believe.
How to help yourself through it:
First you are not crazy and you are not a hypochondriac!
We all need to be very conscious, aware and well researched consumers of medical treatment. You need to be your own advocate and find a doctor who will listen to you and be willing to treat you by symptoms, not purely by test results.
The best places to look are patient to patient advocacy and support groups which you can find both on websites and on facebook.
Many have lists of doctors who are supportive and knowledgeable about specific autoimmune diseases and offer holistic treatment options.
If you don’t feel strong enough to advocate for yourself, take your partner, a trusted friend or relative with you who can speak for you or remind you of things that you need to say when brain fog and stress get in the way.
It is really helpful to have them take notes for you as well so that important information is not forgotten.
Remember, you are the one living with the disease and the consequences of any treatment, not your doctor.
It is important to find a doctor who will actively partner with you, respect you and listen.
5. It undermines your relationships.
When you first become sick, people can be very patient and understanding.
Then time passes and you are still not “yourself”.
You don’t feel well, you have no energy, you are in pain but you look “normal”.
Along with your energy, your sex drive goes out the window. You drag through the day and all you want to do is sleep and everything else feels overwhelming.
Things don’t get done. Your partner becomes irritable or doesn’t understand why you are tired all the time.
Your family gets frustrated. You have no stamina so outings or physical activity drains you and leaves you feeling bad for days.
You may be gluten free or AIP so dining out is difficult. Even eating out at a family members house can cause stress.
You can be called “lazy” or a hypochondriac. Your children may ask why you are sick all the time.
Nobody seems to understand how you feel or why you can’t do what you used to be able to do and it can drive a wedge between you and the people you love the most.
How to help yourself through it:
If you don’t take your condition seriously, no one else will.
Chronic autoimmune diseases are often trivialized.
Everyone knows “someone” who had it and just took a pill and has been fine every since.
Having an “invisible” disease where you look so well but feel so sick is incredibly difficult for others to understand.
You need to explain clearly and repeatedly to your partner and family how you feel and what your disease is all about and enlist their support.
Autoimmune diseases are the eighth leading cause of death among women, can shorten lives and lead to other autoimmune conditions.
In order for you to feel the best you can it is time for some serious self-care and strong boundaries and this is often the area where most people come unstuck because they feel they are being weak or selfish and they feel incredibly guilty.
You have nothing to feel guilty about!
You didn’t ask for this or do anything to deserve it. The fact is that the more you look after yourself, the better you are going to feel and the more you will be able to do.
Having clear, honest communication with your partner, family and friends is vital and learning how to say “no” is a skill that you truly need to learn.
I work with many clients on being able to have these honest conversations and the good news is, it is a skill that you can learn and like anything, it gets better with practice.
Best wishes
Kerry Jeffery.
