Saturday, 27 June 2015

Seeing the Happy Despite Chronic Illness

When you live with a chronic illness, it can be difficult to see the happy. If you are living with chronic pain, the last thing you feel like doing on a particularly bad day is smiling. The 'key to happiness' can be just as elusive as the search for the elixir of life for most people on this planet, whether you have a chronic illness or not. A positive attitude may help some people living with chronic illness, but speaking from experience, telling a chronically sick person that they 'just need to think positive' is one of the most annoying things you can do. Especially if you are living with severe depression like I am (on top of all the physical problems I already have). But there are other keys to happiness; everyone is different, and different things help different people. 

Everyone must follow their own paths to happiness. And this is mine:

The biggest key to my happiness has been 
to connect with others going through the same thing in a supportive environment. I firmly believe that joining online support groups have saved my life and my sanity. Before I took this step, I was in trouble. In the years following my diagnosis, I drifted in a hazy cloud of self-denial, despair, self-destruction and loneliness. 'Friends' walked away because they grew tired of my constant dramas. My illness was inconvenient to myself and those around me; I did not want it, and my 'friends' and family did not want to hear about it. Joining support groups helped me open up to others who understood what I was going through. I realised that there must be thousands of people all over the world who felt like I did: alone, frightened, hopeless and misunderstood, but talking about it and supporting each other. I have made many good friends through the chronic illness communities and I have discovered the incredible healing power of true friendship.  

By reaching out to others, you can help each other and make a huge difference to each others lives. Helping others can be a huge happiness booster. Psychology Professor Karen Pine at the University of Hertfordshire says that "when we make others happy we tend to feel good ourselves too." Experience has taught me that it is the little things that make a big difference. In January 2012, I set up my own support page on Facebook, to promote the humorous side of chronic illness (believe me, there is a humorous side) and to reach out to other people all over the world. My mother taught me from a young age that knowledge is power. When people come together in a support group to share information and advice, you are empower each other to take charge of your illness and fight back. By supporting each other, you are helping each other. 

I am thankful we live in an age where we can communicate with people all over the world at the touch of a button. Many chronically ill people are housebound and cannot attend local support groups, or there are no local support groups available. But thanks to the Internet, we can support each other online. By being there for someone, by sharing advice and support, you can make a huge difference to someone's life. Like I said earlier, joining support groups saved my life and I am grateful to those people who are there for me, supporting me and cheering me on. 

Thank you for saving my life every day. You are my friends and my heroes.   

To draw a conclusion to today's blog post, I will now leave you with a final thought: the most important lesson I have learned about happiness is that each person's idea of happiness is different. You do not have to measure up your happiness against someone else's, because it will not make you happy. In fact, it will make you feel depressed. I spent many years, especially my teenage years, trying to measure myself up against other people and feeling inadequate. Everyone else seemed to have had it all figured out: they were seemingly happy, confident, outgoing and at ease with themselves and their lives. Then I grew up, I left my teenage years behind me and entered adulthood with a lot of emotional baggage. But it was life experience, combined with being diagnosed debilitating chronic illnesses, that made me realise that everyone is in the same boat; even the most happy person in my eyes does not, in fact, have it all figured out. We are all in this together. Life experience has also taught me that placing unfair expectations on yourself is the key to misery. You do not deserve it. You are you and in the words of Dr Seuss, "there is no-one Youer than You." Your own personal keys to happiness are unique, made just for you. Use them and embrace them.

Tuesday, 2 June 2015

Unsolicited Advice

If there is one thing that annoys me more than anything about being chronically ill, it is receiving unsolicited advice. This post is for those of you, who like myself, have been subjected to unwanted and unsolicited advice.

A few examples of the unsolicited advice I've been given before:

You shouldn't take those toxic medicines. Interestingly, most of the people who offer me 'advice' like this do not have lupus. I don't take my toxic medications for fun, I take them because they keep me alive.

My friend has your illness and he doesn't need medication for it. Well good for him! But everyone is different. No two lupus sufferers are ever the same, because it affects each patient differently with a wide variety of potential symptoms that require a wide variety of potential meds to treat it

My aunt has that condition and she treated it herself with [insert whacky remedy]. Please see above. Unfortunately, I'd like to add that there is no miracle cure for lupus and I'm sure once a cure is found, us lupies will be the first to know!

You just need to exercise. It's not quite so easy to exercise when just standing up is enough to wipe you out for the rest of the day. NEXT!
Take echinicea [or any other substance that increases immune system activity]. No thanks, my immune system definitely does not require any extra does enough damage on it's own!

Those painkillers are addictive, you shouldn't take them. Would you like to swap bodies with me for 24 hours???
All you need to do is think positive. Okay, here's a deal. We swap bodies for 24 hours and I'll tell you to 'think positive'. Most likely you'll want to decapitate me. If you had the energy to.

Most people who dish out unsolicited advice to an ill person do not actually have the illness themselves and most likely are not licensed, qualified healthcare professionals; the most they will know about your illness is not very much, if anything at all. Unlike me, they can go about their everyday lives, working, studying, whatever, without depending on other people for even my most basic needs. Life with lupus is an unrelenting round of flares, medications, medical appointments, health crises and everything else. I do not have time for unsolicited advice and it will not help me. I just want to make it through the day.

Should you be the unfortunate receiver of unsolicited and unwanted advice, here are a few tips from from

"...if you decide that the unsolicited advice is not wanted, you can try to ignore it. But sometimes people do not take a hint. So if you can no longer ignore the advice-giving, I found several responses that you can give, depending how polite or direct you want to be:
  • “Thank you, I’ll take that into consideration.”
  • “That’s a good idea, but I have my own way of handling this."
  • “I am glad that works for you. There are so many different ways of doing things.”
  • “Thanks, but I’m fine.”
  • “Thanks, but I don’t really need advice. I’m already researching a solution.”
  • “I’ll ask for advice if I need it.”

Or you can always try some funny or sarcastic comment and see if they stop…*

People offering advice have many motives. They may want to offer 'advice' for one/some/all of the following reasons:

  • They are trying to help
  • They feel powerless and do not know how to help you in any other way.
  • They are nosy and interfering.
  • They believe every health scare story they read in the papers.
  • They simply do not understand what it is like to have a chronic illness.
  • They're looking for new customers.
  • They have had a bad experience with conventional medicine."