Along the way we all need some encouragement and motivation. From time to time we all get incredibly frustrated, fed up cooking every meal, reading every label, completely ready to throw in the towel and start eating a bag of cookies! I get it, I’ve been there too!
Visit the Motivation page – click here – for advice and encouragement that will help you keep moving forward on your autoimmune healing journey. You’re not alone … you’ve got this!
When I was first diagnosed with my autoimmune diseases I started a blog so my friends and family could check in on me. For me it was therapeutic and helped a lot not having to answer a dozen or more texts and emails every day asking the questions I hated (and still hate to this day): “How are you feeling today?” “I thought you were getting better?”
I found my blogging forced me to remain up-beat, and I always tried to put on a strong front. I’d always been a strong person and surely I wasn’t going to let this defeat me! Because of that I researched how to deal with chronic health issues and was fortunate enough to stumble across a great article that explained how facing such a diagnosis is really not that different than dealing with the 5 stages of grieving the loss of a loved one.
I wish I could share that post with you today, but sadly the blog has since been taken off-line. While I’ve looked around for other posts to share with you I’ve not found any that were as well written, so I’ve decided to take a stab at it myself.
Grieving over the loss of your health (or even your spouse’s health or your child’s health) is a very real thing. You’re left facing not just the loss of your health but the loss of plans you may have had for the future. You may be faced with the loss of your career, or even the loss of the ability to start a family. The list of losses can be long and the emotions that come with with can be very painful.
While the symptoms and severity of chronic illness differs from one case to the next, we all typically face in one fashion or another the 5 Stages of Grieving Over Illness: Denial, Anger, Bargaining, Depression and Acceptance. We may not go through them in this set order and you may in fact revisit some stages as your healing journey goes on … because unfortunately healing is rarely linear and while we may see improvements, we may also encounter relapses that can be very discouraging.
No matter what stage you are in, it’s healthiest to accept it and the emotions we’re feeling. Don’t rush the process, just let it happen naturally and know what you’re going through is completely normal.
Any change or loss in your life is likely to bring denial, and learning that you have n autoimmune disease will likely deliver up large doses of it. If your illness or diagnosis came about suddenly you may literally not believe it to be the case. You may seek second and third opinions hoping you’ll find a better outcome. You may try to research your way out of it and turn to Dr. Google for a better prognosis – surely it must be something else! For people like us who embark on the Autoimmune Protocol lifestyle, denial may even come in the form of not wanting to eat properly or rejecting medications because we don’t think we need to – surely it can’t really help.
What often fuels denial is anger … you’re angry that you’re that “one in 10,000” to get a disease, or angry that you’re joining the throngs of what seems to be an epidemic of autoimmune disease suffers. At some point you’ll probably want to yell and scream and maybe even throw things, after-all, it’s just not fair! Anger may also be self-directed, meaning you may blame yourself and mentally beat yourself up for not noticing the signs or taking better care of yourself. And, while I’m not diminishing the frustration of a chronic illness diagnosis at any age, dealing with an autoimmune disease can be especially difficult for young people and those “in the prime of their life.” Watching your plans for the future disintegrate before your eyes is extremely frustrating, not to mention scary … you’re going to get angry.
Try as you might you can’t go back in time … but if you could you’d do anything to make your illness go away! You’d eat better, you’d exercise more, you’d slow down, take less overtime, you’d find ways to manage your stress. Sadly it doesn’t work that way and we can’t bargain our way out of our situation. You might find yourself researching and bouncing back to the denial stage wondering if perhaps it’s really something else that ails you. Wouldn’t we all rather trade our current illness for something less intense? Unfortunately no matter how hard we try, bargaining won’t work, but we can turn those thoughts around and start using them to our benefit … START NOW with eating better, exercising to the extent possible for our situation, step back and allow yourself to say “no” to all the demands on your time and learn how to manage our stress … these are all of vital importance to making your healing journey a success.
We all end up here eventually. It’s just shy of acceptance, we’ve given in and feel defeated or we’ve decided to throw in the towel – we just can’t deal with it anymore. We’re overcome by the feeling that nothing we do is going to make a difference and we’re never going to feel well again … all is lost. This stage is frighteningly easy to slip into and painfully hard to climb out of … but it’s completely normal. Having said that, it doesn’t make it any easier to deal with! It’s frustrating and depressing when you can’t do what you once could, you feel like you’ve entirely lost who you were, you begin to feel like a burden and keeping up appearances becomes almost impossible. Being with friends and family when you’re dealing with any illness can be difficult, but especially so when you’re on an restricted diet. It feels like your social life has vanished – you’re on the grain-free, nut-free, gluten-free, soy-free, fun-free diet … and who wants to be around that? While it may feel easier to simply isolate yourself, it’s best not to allow yourself to slide too deep into this stage of grief, or return to it too many times. Easier said than done … don’t I know it! But I’m hoping the information you’ll find throughout the pages of this website will help you learn ways to manage your grief and depression.
It may feel like it’s taking forever but sooner or later we all finally get to a point where we come to terms with our “new life.” We accept that “it is what it is.” We learn ways to cope with the changes to our bodies, the pain, the fatigue, and the multitude of other potential symptoms you might personally be facing. We realize that we can go on … because we have so far! We learn to celebrate the small victories and obstacles we’ve overcome – whether it’s one week on the AIP with no slip ups, several months and symptom free, starting reintroductions, coming off meds, or just getting out of bed and managing to make it through the day without bursting into tears … it’s the baby steps that count and they’re what will carry you through. As you realize what’s possible for you in your new life it becomes easier and easier to accept, but never feel bad if you circle back and find yourself re-visiting other stages of grief again … it happens.
As I said at the outset, you may not find yourself facing the stages of grieving your illness in this order, there’s no right or wrong here and there’s no time limit either. One thing you should know however … facing each of these stages, as difficult as they may be, are all necessary to your physical, emotional and psychological well-being. NEVER, EVER be ashamed of how you feel! Embrace the process and try simply to find ways to manage the emotions.
I find it helps to try to remain positive … notice I said try? I know that’s way easier said than done, but if you make it a regular habit of finding something to be appreciative each day it can help you snap out of self-pity mode and move forward on your healing journey.
Keep a journal. Take a head-to-toe approach, write down all of your complaints and symptoms (from head-to-toe) … you’ll be amazed and encouraged when you look back and see how far all those baby steps have taken you!
Be sure to sign up for Kerry’s VIP list and you’ll receive a FREE e-book called “Moving through the Grief of Chronic Illness”
Update as of May 20, 2021
I invited Kerry to be a guest on The Autoimmune Simplified Podcast that I co-ordinate for Dr. Alison Danby – be sure to listen in to this powerful episode. Not only does she take us briefly through the 9 stages of grief related to chronic illness, she shares her own story as she lives with four autoimmune diseases as a single mom – she’s such an inspiration!
Listen to the Podcast on your favorite platform (click the appropriate link below) … and be sure to subscribe!
• Apple • Stitcher • Spotify •
I’m hopeful you’ll find some help and encouragement from this post and that you’ll use it from time to time when you need to snap out of the anger and depression, stop bargaining with yourself about what food you can and can’t eat and accept it by re-evaluating how far you’ve already come. ❤
https://aiprecipecollection.com/process/wp-content/uploads/2018/08/pexels-photo-1217993.jpeg12801920Gail Shanklandhttps://aiprecipecollection.com/process/wp-content/uploads/2018/07/AIP-RC-LOGO-CLEAR-1500x515.pngGail Shankland2018-08-19 21:51:142021-05-20 09:09:585 Stages of Grieving Over Illness
While I’m not a huge one for “support” groups sometimes you just need someone to bounce things off of, ask questions, get a little motivation and most importantly not feel like you’re all alone.
I have just one word of warning for you on support groups – always be sure to educate YOURSELF and do NOT rely on information you receive in support groups as the be-all, end-all word on any topic. You should always seek appropriate medical guidance or nutritional assistance over advice you find in support groups. I’m saying this here because I’ve left many support groups because of wildly varying and inaccurate advice – I think they can be very dangerous and prefer to do my own research within the parameters of experts I trust, and when necessary discuss my concerns with the experts. You should know that even groups put together by the experts openly admit that they are NOT closely moderated, and that they rely on “peer-support” – so please BEWARE!
That said, I’m going to start with where to find expert advice. Sadly you may have to search further than your G.P. or medical specialist.
Reliable Advice Online There’s a LOT of information out there … and while Google is a wonderful thing, it is so easy to spend copious amounts of time trying to sift through the good, the bad and the down-right scary! I can tell you from experience you’re better off to find a few exceptional resources and stick to them like glue for your information. Sure, from time to time you may need to branch out, but if you have a solid foundation of online resources that you know are reliable you’ll save yourself valuable time and precious energy.
Functional Medicine Practitioner
As with any significant dietary change, you should in fact only undertake the AIP at the recommendation of a trained nutritional coach or physician.
If you’ve only started on the AIP due to personal research and you’re unsure whether it’s right for you and your condition, I highly recommend you seek the advice of a Functional Medicine Practitioner. You can find one near you using this listing – Functional Medicine Practitioner Listing, and you can read more about it here in my post – Finding Your Root Cause.
Paleo-Friendly Autoimmune Specialist MDs
Yes, they do exist, but they can be hard to find. Thankfully, Eileen at the Phoenix Helix has complied and maintains a list on her website – check it out here.
Personal AIP Health Coaches If you know you need to be on an AIP diet but are struggling to personalize it to your own needs and health condition, you may want to consider the services of a Health Coach. This listing will take you to a list of coaches certified by the experts in the Autoimmune Protocol – Certified AIP Health Coach Listing.
AIP Coaching Programs Beyond hiring a personal AIP Health Coach there are some options for joining online guided group support programs. There are three that I recommend, plus one for autoimmune exercise – you can learn more about them on my Coaching Page. The one you choose will depend largely on your comfort level with making diet and lifestyle changes and whether you’re a self-starter or need more of a support group surrounding you.
AIP Medical Research I get asked by a lot of members joining our Facebook Group as to whether there is really any proof that the AIP works for autoimmune disease, and I always reply with an emphatic, YES! If you’re interested in learning more about the medical studies that have been conducted about the efficacy of the AIP, you can keep up to date via the Autoimmune Wellness website here.
Living Matrix Health Timeline
Whether you’ve seen a Functional Medicine Practitioner yet or not, you’ve probably heard a lot about the importance of finding the “root cause” or “underlying cause” of your autoimmune disease.
To help you get the best support this little tool can help you provide your medical team with a thorough health history and potentially will help you find your root cause, making it easier to achieve healing.
The Living Matrix offers something called MyTimelineTM it’s a powerful tool that enables you to easily document the unfolding phenomena that lead to your ill health – a process that often occurs over many years, perhaps even a lifetime. It gives you and your practitioner the “Big Picture” so you can take the necessary steps to build back your health.
The process to complete your timeline can be long and require a bit of work, but it prompts you to think about your symptoms and issues and – just as importantly – when they may have begun. It also asks about key events in your life so that you can begin to see the patterns – it’s really very amazing! The process was an eye opener to me and can really help your Functional Medicine Practitioner to quickly grasp your health history. Click here to go to the access page and get started building your own timeline (don’t be afraid to add extra details you feel are important) – you’ll even be able to print out a summary when you’re complete. You can read more about it here in my post – Finding Your Root Cause.
Meet Ups & Support Groups
Location Specific Groups Looking for support and want to connect with fellow AIP-ers in your own local area? Maybe you need advice where to find AIP compliant ingredients locally but are having a hard time – who better to ask than someone that lives in your area!
Be sure to check out this comprehensive list of support groups compiled by Autoimmune Wellness … it’s wonderful!
You can find a full list here – they’re constantly updating this, so just select the latest list.
https://aiprecipecollection.com/process/wp-content/uploads/2018/07/pexels-photo-872955.jpeg12811920Gail Shanklandhttps://aiprecipecollection.com/process/wp-content/uploads/2018/07/AIP-RC-LOGO-CLEAR-1500x515.pngGail Shankland2018-07-25 23:43:102022-06-17 21:46:39Where Can I Find Support?
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