You Have a Diagnosis, Now What?

You receive a diagnosis, which is a great thing. I know, sounds absurd that it could be considered a relieving thing to hear. For those with a chronic illness, you’ve been suffering for possibly months maybe even years. At this point you want the diagnosis. So you can work on your health to get into remission, however, receiving it can also make you feel overwhelmed. A thousand thoughts will go through your head all at once. You try to think about what the next step is for you. All you want is to get better, but sometimes you just don’t know what you need to do. Here is a list of what to do next after you get diagnosed.

  • Take a deep breath. 

Now I know this seems a little obvious, however, after years of suffering, countless appointments, endless testing, and hospital stays the search is over. You can now put to rest all of the doubts people had that you were “faking” it. You now have a reason why your joints make you feel like you’re 70, when you’re actually 21. You can now put your mind at rest of feeling miserable, but the reason was unknown. You now have a name to blame the pain on. Take a deep breath, the detective work to figure out what you have is finally over.

  • Study, study, study.

I’ve learned when you are diagnosed, your mind can be all over the place. You have a lot to think about. The best thing you can do is study everything there is to know about what you’re going through. There is no such thing as knowing “too much” about your illness. The truth is, with most chronic illnesses there will be limitations, diet preferences, and learning to adjust to your new life with your diagnosis. When they give you a prescription, it is in your best interest to study your medication. Learn the side effects, the benefits, and what to watch for incase of a reaction.

  • Find support groups or a therapist. 

I know some people aren’t keen on the idea of seeing a therapist. I wasn’t, but when you have gone through agony, pain 24/7, and your life changed in an instant, it is good to talk to someone. You’re under enormous amounts of stress, and the more you keep it in, the more it will build up. It truly is okay to ask for help. They really are there to listen to you, like a friend. I have learned techniques by going to therapy, and just by talking to someone, it honestly has helped me cope with being ill. I also recently joined a POTS support group recommended by my doctor, and it was the best decision I have made during my illness journey. It is always nice to talk to a friend or love ones, but you will always have the feeling that they don’t fully understand. Support groups are amazing in the fact that, there are people going through just about the same thing you are going through. Check online to see if there is a support group for your illness locally. They understand you’re hurting and they are there for you to help each other.

  • Inform your love ones what you are going through. 

I know this may seem strange, because you tell your love ones most things. I have learned that with a chronic illness you tend to hide some aspects of your life, due to not wanting them to see you struggle, bother them, or always tell them bad news. To be honest, it’s important to tell them what is going on to keep them in the loop. For example, I hid a situation where I was constantly throwing up for a while, and having migraines from my love ones because I didn’t want to bother them about my struggles. So they thought I was doing okay and would always ask to hangout, but I had to cancel and it made them think I was blowing them off. It wasn’t the case at all. When I explained what I had been going through, they absolutely understood.  Its important to keep your friends and family updated, the more included they are, the more support you will have. They are there for you, and just want the best for you.

  • Don’t give up. 

They are finally starting to understand what you are going through and finding some answers. I know this life we have been given is tough but you are tougher. Hang in there and show not just others, but yourself how strong you are. You will get through this, don’t stop fighting.

For those with a chronic illness, you’ve been suffering for possibly months maybe even years. Remember, I know this life we have been given is tough but you are tougher. You deserve as quality of a life as the next person. Stay strong, stay positive, and never give up.❀

*I’m not here to treat, diagnose, or go against Dr. Orders. Just here to provide support comfort and help. *

91 thoughts on “You Have a Diagnosis, Now What?”

  1. Excellent advice my friend. The only thing I can add is…give yourself time to let the diagnosis wash over you. Denial may be your first thought….after all it took them this long to think of this diagnosis….why should I accept it? Read and think how this may apply to you. Acceptance also happens in stages.


  2. πŸ˜€ πŸ˜€ :D… I always tell people that are newly diagnosed to stop and BREATHE!!!! I also couldn’t agree more that there is a lot of benefit in therapy and its important to be honest with those you care about, but don’t you feel like the information is overwhelming. Dr. Google scares the hell out of me. I look up causes for low blood pressure and by the end of my “sit down” i diagnose myself with cancer and a brain tumor etc. It is important to educate yourself, but be sure to consider the course and remember that just because something could happen or works for one person it may not work for you. Great post Mackenzie! Thank you for sharing!

    1. Thank you so much!! You’re exactly right about the self diagnosing! I just find it important to look over what you have already been diagnosed with just to know the ins and outs of it! Thank you!!! 😊

  3. You have met all the thing that have happen head on with the courage and strength that’s need and let those that care about you be apart of your journey through the most trying times its great that you can reach out and find support to help on your journey

  4. Great Article and advice, and you’re right, never give up, I tried acupuncture on my neck with my physio last week, only my first go, but I think there’s a bit of relief, we’ll keep it going for a few months. Hopefully it’ll be of some benefit. …..

  5. Wow. It sounds like you’re dealing with a lot. I hope you find the best path forward that affords you the least amount of anguish. It sounds like you have the right attitude and mindset to find that right path.

    I think your struggles are worse than mine but I’ve juggled a lot of medical issues in the past and continue to do so. I think all of your points in this blog post are great especially when you say “Study, study, study.” I think if people take an active role in their health and medical care they fare much better. I know to some people it sounds bad to say you’re double checking medical professionals and the support staff by asking a lot of detailed questions about treatments and diagnostic tests but I’ve seen a lot of carelessness and oversight in scenarios that could have went bad with my own care. I almost lost my life due to a very severe case of diabetic ketoacidosis and I was in the later stages of it when I finally self-diagnosed it and barely made it to the ER. That’s how I found out I had type two diabetes about 8 years ago. My doctor had been checking me for diabetes for over 12 months prior to when it hit me and every test came back negative. When it finally hit he thought I had a severe case of the flu and was pumping me with steroids, injections and pills which is like pure poison for diabetics in that life threatening condition. Basically my blood turned to acid and my body started shutting down but after a long stay in the hospital and even a much longer recovery period with strict diet and exercise and medications I got my blood levels stabilized. I still deal with a lot but most aren’t life threatening like that one was.

    Well, I wish you the best. Good luck. Thank you for sharing your knowledge.

    1. Wow, thank you so much!!! I’m extremely sorry to hear of your illness journey. Sounds like you have faced a lot of scary situations and i hope you are now on an easier path. I completely understand what you discussed with finding wrong answers. I had terrible left abdominal pain for a year. They did scans and everything under the sun. My mom was looking at a blog of a young women who went through pretty much everything I did. Long story short after doing our homework with the several chronic illnesses I have my ribs slipped. So my mom is the one who found it and the Drs diagnosed me. It’s crazy the amount of things that get overlooked. I’ve been on my illness journey for almost two years and they are just now finding some answers, but we will get there! Thank you for sharing your story and best of luck!!!

      1. I think your mom might have just helped me, too! I had pain in that area for years- even went to the ER for it- and everything that was tested for was looking at organs, not ribs! Oh, wow, that’s such a relief, thank you so much for sharing that story. Now I finally have a name for what was going on- I was convinced it was my kidneys, of all things.

  6. Getting a diagnosis can be a lot to take on, but you’re right, it can be very validating. It can also mean finally getting the right treatment.

  7. Hi Mackenzie, this is great advice. Your first paragraph reminded me of when my daughter and I sat in the doctor’s office waiting for him to come in. She had gone through about three years of symptoms and tests, but no doctor could figure out the cause. One prayer is wanting to know the answer, but when it’s heard, it’s also overwhelming, daunting, and the list goes on. It’s been five years, and except for a few ER visits, she’s fine. A liver transplant is on the horizon, but when? We don’t know. They said within ten years after she’s diagnosed. It’s been five now…she has Primary Schlerosing Cholangitis – an auto immune disease affecting the bile duct and liver. She doesn’t drink, it’s all auto immune. I’m sure you know the emotions, the stages, that you go through when you find out something like this. But, then you learn to accept and move on. She has the best optimistic mind-set and lives in the here and now, doesn’t worry about the future. My husband and I follow her example, but sometimes it’s a little more difficult. She was 21 then and 26 now, but she’ll always be our little girl, and the last thing we want is for her to suffer.
    You are truly an inspiration, and I wish you all the best, too. xo

    1. Wow, your story is very similar to mine. I’m so sorry you and your family haven’t had it easy, at all. Thank you so much for sharing your story. I pray for peace and healing for your family and I hope you see clearer skies. Thank you again. And if you both ever need to talk about your illness with someone who gets it please feel free to contact me on here.

      1. Thanks so much, Mackenzie, and I wish all the same for you and your family, too. For the most part, she’s doing fine, and all we can do is take one day at a time, don’t worry about the future, and keep the faith. Take care of you. ❀️

  8. Great post. I think blogs like yours and mine are important so people have more information about mental illness. My daughter has ADHD and anxiety, and I don’t think people know enough about it yet. We are moving in the right direction, but it’s not enough yet!
    Happy blogging
    Chill Mom

  9. A fantastic post! I highly recommend all of this, especially the support group, and therapy. We had some support in the beginning but it faded over the long term. We didn’t know we needed therapy over the years but looking back, we sure did. Thanks for your post.

  10. I appreciate the reminder to study about my illness. I sometimes feel so victimized and studying helps me take control of what I know and how I respond to my illness. Thanks for the reminder to not give up!

  11. Someone I know well has gone through some of the same things. Doctor after doctor, just hoping that someone can give a diagnosis. It’s frustrating when doctors just want to mask the pain with a little medicine and are not willing to actually fix the problem. πŸ™ Thanks for the encouraging post, though!
    ~ Megan Joy

  12. Hello Mackenzie,

    I am sorry to hear about your illnesses.

    I have only one tip and hope that it helps. Whilst acts of belief can be effective, acts of disbelief can also be very powerful. The depressed mind becomes pessimistic and misleading. It may tell you that it is not worth going out today. Saying to yourself “that is my pessimistic mind misleading me and I’m out going anyway” sometimes leads to the discovery that it wasn’t so bad after all.

    Alternatively, if it was dreadful, you can have fun swearing at me and devising ‘orrible tortures. It’s alright people have sworn at me before or said things “oy you, what are doing in my garden”.

    Or try my Brighten the Day Gallery – (it’s got got muppets in it)

    and then there is always sam

    1. Thank you so much for the tips! I always try to think of the positive sides every decision. Not the easiest but it gets me through it All! Thank you for reading!!

  13. yes, once we have the diagnosis, we need to know more about the illness. We can face it better if we have more knowledge about it. You express your thoughts very clearly and systematically. More power to you, dear girl.

  14. EXCELLENT advice! Thanks for sharing your struggles and your tools to help. And, I just looked up and saw the denial post- yes! The denial and grieving is important too. I dealt with denial for several weeks into my own diagnosis and am now starting to get through that. Thanks so much- you have encouraged me today!

  15. Good advice is the best advice to share – thank you for being out there! I have sent a link to your blog to my son’s girlfriend. She has just been diagnosed with EDS.

  16. What a wonderful post, your advice is great and you are indeed showing support, comfort and help to those who may need it. Have a fab day x

  17. MacKenzie,
    I have no criticism toward the contents of this post. Your advice is beneficial and spot on.
    When it comes to a known diagnosis, playing your cards close to the vest is not the better tactic to laying them on the table; when it comes to your family and friends. It is true, it often is taken as a slight rather than a concern for their feelings. And so many want to support you with kind words, acts and prayers. No cross needs to be born alone…even Christ had Simon of Cyrene.

  18. If you have celiac disease you may find the book series Wheat Belly by Dr. William Davis helpful. The American diet of junk and processed food is causing people to live less full and illness-ridden lives. Following the Wheat Belly lifestyle has improved my life in many ways. I hope you find answers and relief.

  19. I’ve only recently came across the blog but wow, thought provoking and touching. Reading through them, really well done.

  20. “Oh, 99.9 percent it’s nothing.”
    This is what my surgeon said as I went under the knife. As the dullness of general anesthesia left my body, with the first instance of awareness returning,
    “Kenzie, you have cancer.”
    With those words, my brain and body sent me reeling toward death. Revived, and lying in intensive care, a process began. First, disbelief, then anger followed by depression, and finally the survival mode kicked in.
    “I’m going to beat this.”
    Thankfully, I did. Yet, there were other forces in my life travels that called upon similar action.

    Just remember, the axiom, this too shall pass, and know in your heart that change is inevitable. Cling to hope with every ounce of your being.

    1. Thank you for sharing your story, I’m so sorry to hear what you’ve gone through. I hope things are better and wish for peace for you. Thank you so much, best wishes!

  21. I think this advice applies to both mental and physical illnesses.
    Many people think that mental illness is something that needs to be handled alone but it really requires as much emotional support and online research as physical illness.

    1. Absolutely! I completely agree with you. So many people classify mental illnesses as something that is mental. But they dont realize that it takes just as much effort in research, treatment, and support. You’re exactly right!

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