Getting a diagnosis is an emotional roller coaster ride. Whether for a mental or physical health issue, you could be standing amidst shock, disbelief, epiphany, clarity, confusion or even a huge dollop of why the heck did this happen to me! This is a roller coaster I have ridden 4 times in my life. And I can still remember how each and every time I have stood there, with my new label wondering how the heck I was going to cope and what this label was going to mean in my life.
My diagnosis roller coaster started at school with dyslexia. Then about 20 years later I was in hospital the day before my 30th birthday on an insulin drip fighting for my life against ketoacidosis being told that I had diabetes type 1. Obviously this was a life changing diagnosis. It changed everything. My diet. My sleep patterns. It affected my hobbies, my social life and even my sex life. It was traumatic and scary. I still have challenges dealing with it today. But that was only the beginning of my roller coaster ride.
A few years later after a bad head injury, a bad break up and losing my job i hit probably the lowest point in my life. Everything became too much and I couldn’t go on. So I tried not to. Luckily I had a wonderful person in my life who stopped me and got me the help I needed. Eventually after doctors meeting and psychiatrist meetings I found out what was going on. Bi-Polar (type 2). I think this was one of the hardest moments in my life. Being told that my brain simply worked differently and that the only way to cope with it was to be on meds for the rest of my life. I remember thinking not more meds. I knew nothing about Bi-polar. But it scared me. Mostly because of the stigma attached to it. Of all of my diagnoses this was the hardest one to accept.
But I did and life carried on. The meds worked. I am stable and to be honest all these diagnosis have made me more self-aware, take care of myself better and my life has actually never be so good as it is now.
But apparently I like collecting labels because a few years ago I got one more.
My psychiatrist told me that as we have many people in my family with autism she wanted to test me. Sure I thought. I was surprised to get the results. I have Aspergers. I am surprised I didn’t realise myself honestly. I have a long history and relationship with Autism. Not only have I grown up with a sibling with autism, I have also worked in schools supporting and teaching children and adults with many different diagnosis including autism and ADHD. Despite all my knowledge I had never made the connection that I could be on the spectrum too. Now in contrast to the last diagnosis this was the easiest to accept. It made sense. In fact it explained so much. And in many ways has made my life so much easier.
These days I just say I have a label that fills each box. I am thankful for the support I get and the understanding of those I live and work with. Infact as a life coach my diagnosis are a strength rather than a weakness. Aspergers does wonders for time management and practical action solutions. Where as having both mental and physical health issues really makes me understand the importance of work/life balance. Of course there is the stigma that comes along with it, however that does help me prioritise the people I want in my life, taught me to set boundaries and has encouraged me to work on my self confidence.
Now I know I am truly lucky to live in a country where the public services have an amazing health system compared to many other countries in the world. I got and get a lot of support to understand and live with my diagnosis. Today I feel so blessed to work with many adults who have diagnosis or labels around the world. Supporting them to accept, live and work with their diagnoses. Understanding their labels and empowering them to get the best out of their lives whilst taking the best possible care of themselves.
However, today as I came away from my recent check up at the doctors I thought about the rest of you who live in one of these countries where I understand the experience can be to be diagnosed and then in essence dropped afterwards. Basically congratulations you have a new label now off you go with no help!
It must be so hard and so scary for you. So I would like to help.
In my personal and professional experience there are a few things you can do when you first get your label to start getting on the road to recovery or stability depending on how your diagnosis works. And no matter what you have been diagnosed with all of these actions will help.
Step 1: Get informed
I cannot stress enough how important it is to understand your diagnosis. Ask your doctors. Ask the internet. Ask the charity organisations. Find a book on amazon. Remember with any diagnosis the conditions and advice varies depending on your own biology. However the more informed you are the more you will begin to understand yourself. I always maintain if you understand something you can do something about it. This is your body and your life so don’t wait for someone to tell you how it is going to work. You can start finding that out straight away.
Step 2: Get a support circle
Support is the next thing. When you first get diagnoses you might not feel ready to shout it out on social media or tell all your colleagues. However, you do need support. Choose a few trusted people who you can rely on and talk with them about your diagnosis. When I got diabetes I found it really helpful to have someone sit and take notes for me. There was so much information to take in without those notes I could never have remembered it all. To this day Mr T comes with me to the diabetes nurse. He often remembers the questions I forget to ask. When I began the process of meds for Bi-polar a good friend came with me. And when I got the Aspergers diagnosis I asked for help from a colleague that worked with special needs to help me figure out how I could do my job without having meltdowns. My family I told although they didn’t really understand. Some people won’t. But don’t think that is true for everyone. It is ok to ask for help and the people that love you will want to help.
At the same time have a look at what help there is in the public sector. I would really recommend contacting the charity organisations they have the best knowledge of public support, educations or support groups etc.
Step 3: Routine and breaks
No matter what diagnosis (or for that matter non diagnosis) for a healthy life balance you need to have structure in your life to help you be the best person you can be. I found understanding what gave me energy and what doesn’t a good way of planning my week, delegating or just accepting and letting go I can’t do it all on the bad days. Creating healthy boundaries for breaks and recharge days is a another good tip. I refuse to do anything organisational, work or chores after dinner most weeks of my life. It gives me that mental health time I need and seriously makes me effective in my time management. I also find that having a plan on how to cope on the bad days makes it easier too. (I will write more about this in another article to share my tips and tricks.)
Step 4: Talk with people in the same boat
No matter what diagnosis you got there is 99% chance that someone else in the world has the same one. And the great thing with the internet is that we can connect with them. One of most empowering experiences I had was through a diabetes forum during the first 6 months of my diagnosis. There may be local groups who meet up and these can be great sources of inspiration and laughter. Which honestly is one of the best ways of coping with your diagnosis. And there are also groups and online forums for the people in your life who are supporting you with your diagnosis. There is a lot of inspiration out there on what you can do to make your life easier. Not all will work for you but somethings will.
How you choose to follow these steps is up to you. Although I would recommend not doing it all at once. Choose one that you feel comfortable with and try that first. And I am very aware there are many more phases of coping with a diagnosis. Accepting is a long process this is just my recommendation of where to start.
The most important piece of advice I can give to any of you who has recently received a new diagnosis and is sitting with a new label in hand is to work with your diagnosis at your own pace.
I have seen first hand the awful things that can happen when people live in denial of their diagnosis. In my experience learning about it, being honest asking for help and working with diagnosis makes it manageable. And most importantly makes your life better.
If you have had a diagnosis how did you cope with it. Please share your tips and stories below and help people who are going through what we have been through