Today I’m writing a kind of confession and it’s something I need to get off my chest. I’ve decided to be a blogging rebel. I’m going to do things my way and stuff the “you should”, “you must”, “this is the way” mentality.
The thing is, I started a blog in 2015 which became quite popular. I shared my feelings, what I felt, what I dreamed of and how life was for me and my family and then I discovered “the blogging rules”. I learnt about making a blog into a business. I learnt how to create evergreen content for an audience and I followed what I was told. I followed suggestions and advice and whilst I do get a good following and great page views, I feel THINGS ARE NOT where I want them to be. Not at all. I want to be random..I WANT TO GO BACK TO THE WAY I WAS.
I love the direction my blog was heading back in the early days, sharing about my life and our adventures and family experiences however I got afraid. I did not want to overshare about my life and I didn’t exactly want all the world to know every detail and so I moved direction and began writing more about “how to” style posts. I began sharing things I loved in another way, fun ideas and fun activities. This was well received but different to how I originally blogged and over time I’ve become confused.
I think my direction changed a little as I listened more to the crowd. My blog posts were also influenced by my changing medical status and by courses and classes I took on “how to blog”. They say if it’s not broken don’t change it. I have tried to not change but improve however I’ve found myself making changes which simply don’t work for me and I am just starting to see what these are.
My talent is to write how I feel. That is what people like the best when they read my blog but I have been hiding in a shell for the past 8 months.
What happened and why did I change? Well I got the adrenal pump! It’s a long story but this is what happened. I blogged about life as a Mother with Adrenal Insufficiency and illness. I shared about my condition and was raising awareness and people were supporting me and cheering me on to get the treatment I needed.
I shared my experience and did have health improvements, however Adrenal Insufficiency is not my only chronic condition and therefore I am still unwell a lot of the time. However I got an adrenal pump and my adrenal health has become more stable. I no longer go into hospital all the time with Adrenal Crisis and can live happily as a chronically sick mother at home. This is where I am at.
So what is the problem?
As soon as I got the adrenal pump, I began getting emails and messages constantly from others in the UK and around the world wanting this treatment. The only things is I cannot give this to these people. I managed to find a doctor willing to work with me, however it took me 3 years to find someone and I was asked not to share his details with everyone. He is not able to work with lot’s of patients with the pump and this for me was a trial and part of a study.
Yet I was constantly asked about my treatment from others who like me are desperate to feel more well. So what did I do. I struggled to say sorry I can’t help you. People expect me to share all the details of my doctor, the treatment and so forth but the realty is I am back under the care of my own NHS team and whilst I saved for treatment and got a pump, I am managing the treatment on my own. I get a script from a doctor but I have to pay out for this and for my treatment on a monthly basis. It’s not a treatment the NHS is willing to fund and or take part in as they don’t have the experience. Whilst my NHS Endo does recognise the benefits and improvements in my health I cannot be funded for my treatment.
If a Doctor has asked me to keep my treatment details private then I should respect that. What happens if I go and tell everyone who treats me and he gets 100 phone calls and as he said, gets bombarded with patients he cannot help at this time? I will bear the brunt and risk losing the support I have and whilst I want others to feel more well, I have to think of my own health and my daughter. If I lost the pump she would suffer. I don’t want to lose out on the opportunity to have medication that works for me because I talk about it to everyone and make the Doctors uneasy.
I feel like I’m stuck between a stone and a rock.
So last year I stopped talking about my health on my blog, although it is still a huge part of my life and I changed my blog name and focussed on Inspirational ideas. My decision was heavily influenced by the fact I got the adrenal pump and the pressure I’ve been having from others to discuss my treatment in detail. I don’t want to DISCUSS THIS!
I want to continue my treatment without the risk of losing it. I want the research to go ahead and I want my experience to inform decision making in future so that It can help others in my situation but… at the end of the day I searched 3 years for a Doctor to help me. I paid over £6000 and got more stable and I’m not about to throw it all way when the risk is too great for me and my family.
I’m not being selfish but I am putting my health and family first and by allowing the Doctors to get on with helping me and study my case, it will eventually help others.
From now on if I get an email I will be referring people to this blog post. I’m sorry but I cannot discuss my treatment as it’s a condition of my treatment.
I suggest if you want to trial the adrenal pump for yourself speak to your Endo, visit and ring up private Endo’s until you find someone willing to help you. Money is and may seem impossible but we scrimped and saved for 3 years for my treatment and still do budget like crazy for the money fees. You may have to do the same no matter what your circumstances.
I won’t be sharing and discussing my adrenal pump with others. I am sorry. I will say that it did improve my quality of life because I struggled to take tablets and absorb my medication and now I am getting the cortisol replacement that I need. I still have other health conditions which affect my daily living but I’m not going to discuss it.
So please don’t take it personally but I wont be replying personally to the 10-20 emails I get each week. I can’t. I don’t have the time when I feel so unwell from other conditions too.
What I will be doing is rethinking how I blog. I want to go back to sharing more about me and my family but not WRITING ABOUT MY PUMP. I wan’t to go back to diary style posts a little more and balance that out with my how to ones. I want to be random like I used to be.
I don’t want a planned week. I don’t want a blog schedule and I don’t want to conform to what people think I should do. I want to be me. I am going to be me and write about me, share my thoughts once more and opinions but not about the pump and I guess you will either respect that or not.
The one thing I want more than anything is for others with my condition to become more well and to raise awareness but I can’t do this by sharing about my personal treatment. I’m going to look at my blogging and consider what I want to do in the coming days and weeks. I won’t change drastically but I think I will go back to some more personal style blog posts and in my own way.
Now I’ve said how I feel. I guess I feel a little like a blogging rebel. I’m taking charge. I will no longer hide myself because I’m afraid of people bombarding me. I will simply say ..visit this page and read my answer.
My answer is this. I’m sorry about your health situation but I cant help you with your request. Hopefully I can help in future. I sincerely would like to. I hope you understand.
I do feel a bit of a rebel for doing this but I have to do what is best for me and my family.
I am not going to let my fear of doing what “others think I should do” stop me anymore. I am going to write more in the style I want and I am going to talk about my health and life again but not share treatment details. I’m also going to start doing my weekly roundup post of the things I’ve done with my family as I really miss that style post.
Laura's Lovely Blog says
What a great post and one I can do relate to. I feel like I’m having a bit of a crisis of content a bit myself. It’s easy to get lost in the should do when you should be focusing on what works for you. In terms of your pump, I think you are doing absolutely the right thing and if the doctor specified they wished to remain anonymous you must respect that no matter what people email you. Anyone who reads your blog can see how much you have fought for your health and your treatment and that in itself is inspirational xxx
Thanks Laura. It’s been a tough few months and I’ really trying to work out what works for me. I guess finding my voice is a long process and I can still speak about my life and health as you say without giving away information I’m not free to speak about. 🙂
Kim Carberry says
I think you are doing the right thing when it comes to your blog and the pump….
You fought for years to get the pump and improve your health. You have been asked not to share details and your doing the right thing by not sharing them. Good on you! x
Thanks kim. It’s a tough situation and something I have to do for me!
I’m so sorry this has been your experience. I can’t imagine readers asking for and expecting the level of advice you describe. My goodness .. that’s so unfortunate. Certainly we want our blogs to resonate with our readers .. but at the end of the day we have share in a way that works for us. Good for you for taking a step or two back and reevaluating!
It has been tough and I need to do what is right for me.
PrettyLusciousThings (@MsPrettyLThings) says
Girl, write how & when you want to write – it is the only way that’s right and you know it makes sense.
thanks. It’s true. I need to just wrote how i feel.
Ana De-Jesus says
Aw you can always message me if you need someone to talk to, it must have been tough for you to receive so many emails and not be able to help them. The thing is just by writing posts like this you are helping people and regardless of what courses you take that tell you how to blog, ultimately you have the key to it. You won awards, have a high following and good traffic and most of all are a true inspiration to many of us. I am glad you are back as a blogging rebel, we have missed you x
Thanks Ana. 🙂
Rhian Westbury says
I think too many people do their blogs how they feel they should without going with what they want to do x
It’s true and sometimes you can get dragged down the wrong path. I find if i head off in the wrong direction or get off balance, I always find my way back to my original style.
I think you should definitely be yourself and not conform to others
Stephanie Merry says
What an honest and heartfelt post, you should just write about what you want to write about x
Thanks. I’m glad you enjoyed it.
Shannon (@smritchie12) says
The more you write what others want as oppose to what you want to write about, blogging seems less enjoyable! Good for you for taking the stand, write about what you want and write when you feel like it! 🙂
I agree. I think I will just wrtie what i want, how i feel and speak out!
Sally Akins (@SallyAkins) says
I can understand people wanting to find out about the pump, but like you said, you have to respect your doctor’s position as well. I think you’re doing exactly the right thing!
Me too and I really want this to be available to others too. That is my dream. It’s a tricky situation.
Melissa ? (@fruity_flamingo) says
Great for you wanting to blog about what you want, that way its so much more enjoyable I think
Thanks Melissa. It is important to try and be true to who we are!
I think it’s an important lesson we all learn as we get older that you have to do what makes you happy and stop trying to please others and compromising your own happiness. I tried changing my style to fit “the rules of blogging” but I just lost my love for it and so went back to what works for me
Personally I don’t think of you as a blogging rebel as such, more “being true to yourself”
Do what you love and enjoy and don’t feel bad about not being able to help everyone. Your treatment was down to your hard work, and doctor patient confidentiality works both ways! You wouldn’t like him passing your name around, and so therefore don’t feel about about not being able to share his!
I look forward to reading more about what you love xx
Rachel Simpson says
I think it’s easy to get pushed into a box in terms of your blog but it’s all good as long as you stay yourself and post what makes you happy ! xo
Great post, as I just relaunched my blog I am definitely going to take a leaf out of your book. Try to always write naturally and just how you feel rather than using some kind of blogging shoulds and musts. x
Thanks for reading. Just be you.
blogging is totally something that is different for everyone and you need to be able to enjoy it! Post when you want, post about what you want to post about and just have fun with it!
Helen Costello says
Some of my favourite posts are the ones where I have just written about something random because I got the urge. I completely get you when you want to do things your own way. I look forward to reading more of your family roundup posts – I’m starting to go back to writing more about my family too. I want to look back on the blog as a true reflection of what we do.x
Kristina ?? (@KrisEvilCupcake) says
I definitely struggle to write naturally sometimes but it’s something I’m working on – to loosen up a little!
Mummy's Monkey says
Absolutely you should put your health and your family first. You don’t need to talk about anything you don’t want to on YOUR blog
You need to stay true to yourself and share what only you want to. I also have s number of chronic illnesses that I hint about but I’ve never gone as far as explaining fully. I think it’s because I don’t want pity