When you are living with a chronic condition such as PCOS having a good support system can make the difference between feeling on your own and feeling empowered. Let's take a look.
PCOS Support Groups
What is a Support Group?
While Doctors can provide information on the medical aspects of PCOS and family members can sympathise it can be easier to talk to others who have PCOS. A support group is a medium for discussion and sharing of experiences related to living with PCOS. A good support group allows you to connect with others and to share concerns with people who are going through the same things. Being part of a support group can provide emotional support, reduce stress and improve coping with your condition. Groups can make you feel less alone and by sharing coping tips with others you can learn more about PCOS. In addition, some groups provide educational resources which may help with your Doctor visits by enabling you to know which questions to ask or which tests to request. Groups are either face to face where you meet in person and others are online where you chat on social media or a more private forum.
Where to find a group?
There are many support groups on the internet and social media sites such as Facebook. You can find them by searching in Google or by contacting any of the PCOS charities such as PCOS Challenge or ourselves at PCOS Vitality. Chose a group that you are comfortable with.
Things to consider when choosing a group.
1. Privacy is one of the main things to consider when choosing a group. Some of our experiences in PCOS are very personal and so you want a group that takes privacy seriously. Ask questions before you join to make sure you are comfortable with the level of privacy provided. Be careful what you share and realise that it is the internet that you are sharing it on – some groups permit people to send them sensitive or embarrassing questions by private message which can then be in the group anonymously.
2. Consider if you want to be part of a group who aims to promote or sell goods to you. Many people offer goods or services for PCOS but you may not want to be bombarded by advertising and promotions. Check if the group is sponsored by commercial groups or professionals. It may be something you chose to avoid.
3. You may be anxious/scared/lost/unsure at first about joining a group – or feel uncomfortable. It is normal to be a little cautious and it is usually fine to lurk in groups to just learn from the discussions without contributing.
4. Make sure the group is the right fit for you. Pick a group that you find uplifting, not one that makes you worry more. Remember too that we are all at different stages of our PCOS journeys so you may find that some groups don’t meet your current needs. For example, a group’s main focus could be fertility and this may not be your current goal.
5. It is important to consider that you may confront negative aspects of PCOS as you learn more about it in a group. Remember though that not everyone with PCOS develops all the symptoms. The topics covered may contain upsetting themes or things that you do not agree with. It is advisable to ignore or scroll past some conversations. Social media breaks can be useful if it becomes overwhelming. Be prepared to block people who may cause you any upset. It is important for you not to feel judged.
6. Accuracy of information on the internet is a concern, always check with your Doctor before starting any kind of treatments, supplements or exercise. These groups are not providing medical advice, just sharing experiences.
7. Look for kindred spirits who can help you by sharing solutions and not adding to your problems.
Advantages of Support Groups | Disadvantages of Support Groups
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Learn more about PCOS | Privacy may be a concern but you can always “lurk”(be in a group without commenting)
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Gain social support | Information may not be evidenced based
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Help yourself | Some groups are commercially based and advertise and promote goods or services |
Help others which can be rewarding |
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Increase your confidence | You may encounter negative aspects of PCOS which may not be relevant to you
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Become informed and able to advocate for yourself | Sometimes there are disagreements but you can scroll past these, block users or take a social media break
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Connect with others so feel less alone | Some groups may not be relevant to your current life stage, so you may need to explore a few until you find the right one for you |
Feel better emotionally
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Find tips or tricks that may help with your PCOS symptoms |
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Key takeaway message
If you have a need for connection (some people may not), you may find a support group useful in coping with PCOS. Remember that other people with PCOS are not health experts and they don’t know your family or medical history so all they can do is share about what works for them. PCOS affects us all differently. Despite some disadvantages, generally, support groups can be a very positive way of helping you cope better with PCOS when you find the right one. Don’t forget, it is usually ok to “lurk” to learn more about PCOS too. So, it really is worthwhile considering reaching out and getting some support from the PCOS community if you are struggling.
© PCOS Vitality, 2022.
