Support – Importance of Finding That Connection with Others Who “Get It”by RNE submissions on 10/06/18
By Joanna Mechlinski
No matter who you are or what your life is like, chances are you’ve longed to connect with someone who can understand you. Whether you’re passionate about a particular hobby or the parent of a certain-aged child, there is no feeling like the one you have with others who share your situation. Sure, your family and other friends may say they understand; and perhaps they really do. But the bond between two people undergoing similar circumstances is undeniably special. That’s why it’s so important for people with rare diseases – and their caregivers – to find support.
Even better, in today’s world you can find a group that suits your needs. If you prefer going out and meeting with people face to face, chances are, you can find that. If you prefer (or need) to stay home, or if there aren’t many members in your local area, you can find a group online. Now that the internet’s been in common use for a good 25 years, you can even have your pick of online groups – as with anything else in life, there are different variables that may make one group a better fit for a particular individual than another.
One important point to note: Take everything you read or hear in your support group with the proverbial grain of salt! While they can be a lifesaver, both emotionally and in terms of knowledge (you may learn about lesser known treatments or “hacks” through the experience of others) you should never take the things you learn as 100% without further research or speaking to your doctor.